Responding to the Challenge of Diabetes in Canada · prevalence and other diabetes information. The National Diabetes Surveillance System (NDSS) is the mechanism developed to provide

Responding tothe Challenge of

Diabetes in CanadaFirst Report of the National Diabetes

Surveillance System (NDSS) 2003

Our mission is to help the people of Canadamaintain and improve their health

Health Canada

For additional copies, please contact:

PublicationsHealth CanadaOttawa, OntarioK1A 0K9

Tel: (613) 954-5995Fax: (613) 941-5366

Available at www.NDSS.ca

This publication can be made available in/on computer diskette/large print/audio cassette/braille, upon request.

The opinions expressed in this publication are those of the authors anddo not necessarily reflect the views of Health Canada

Ce document est aussi publié en français sous le titre :Relever le défi posé par le diabète au CanadaPremier rapport du Système national de surveillance du diabète (SNSD), 2003

© Her Majesty the Queen in Right of Canada, represented by the Minister of Health (2003)Cat. N° H39-4/21-2003EISBN 0-662-35419-25602

Responding to the

Challenge of

Diabetes in Canada

First Report of the

National Diabetes Surveillance System (NDSS)

2003

Acknowledgements

Many organizations participate in the NationalDiabetes Surveillance System (NDSS) ascollaborators or partners: provincial/territorialgovernments, non-government organizations,aboriginal groups, academics/clinicians, thefederal government and the pioneering sponsor,

GlaxoSmithKline Inc. The full list of participantsas well as persons currently involved in NDSScommittees are listed in this report or itsappendices. We thank all current and pastmembers of NDSS for their contributions.

Acknowledgements

i

Executive Summary

Diabetes is a serious and growing public healthproblem in Canada, particularly in Aboriginalpopulations. The morbidity and mortalityassociated with diabetes are increasedconsiderably by complications such as heartdisease and stroke, blindness, kidney disease,nerve disease and amputations.

To date, there has been a lack of ongoing,systematic, validated Canadian analysis for basicprevalence and other diabetes information. TheNational Diabetes Surveillance System (NDSS) isthe mechanism developed to provide improveddata about diabetes. It is a network of regionallydistributed diabetes surveillance systems thatcompile administrative health care data relatingto diabetes, and send aggregate anonymous datato Health Canada for national analyses.

This is the first report comprehensively describingNDSS. It covers:

� the original concept of using health careadministrative databases to track diseaseburden in a population;

� studies that have demonstrated thefeasibility and validity of the concept;

� activities directed towards assessing andimproving provincial/territorial capacity toparticipate in NDSS;

� strengths and limitations of the NDSSapproach;

� structure and governance;

� a special focus on Aboriginal populations;

�methods of data capture;

� prevalence and mortality data; and

� future plans, including validation of adiagnostic algorithm for diabetes in peopleunder 20 years of age.

Highlights of NDSS data include the following:

� prevalence of diabetes among adult Canadiansin 1999/2000 was 5.1%;

� 1,196,370 adult Canadians were living withdiagnosed diabetes in 1999/2000;

� Canadian adults with diabetes are twice aslikely to die prematurely compared withadults without diabetes; and

� 41,483 adult Canadians with diabetes diedin 1999/2000.

NDSS represents the first time that acoordinated, national use of administrative datafor public health surveillance purposes has beenundertaken. NDSS can measure prevalence,incidence and outcomes over time for both thenation as a whole and for specific regions. Alsofor the first time, NDSS can compare healthservices use and other health outcomes of peoplewith and without diabetes. With these features,NDSS is also a prototype of enhanced capacityand infrastructure to support surveillance forother diseases that can be tracked through thehealth care system.

Executive Summary

ii

Canada was in a unique position to develop thistype of surveillance system, given its publiclyfunded health insurance generating person-specific administrative data. NDSS use of multipledatabases offers information on diabetes that is farsuperior to what would be possible using onesource alone. The resultant rich source of data can

be used not only for surveillance but also forexamining many policy and research questions.

Perhaps most importantly, NDSS was the catalystfor exciting partnerships with various jurisdictionsacross Canada cooperating to achieve the sharedgoal of reducing the burden of diabetes.

Executive Summary

iii

Table of Contents

Acknowledgements. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . i

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ii

List of Figures and Tables . . . . . . . . . . . . . . . . . . . . . . . . . . . vii

Acronyms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . viii

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

The Challenge of Diabetes . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Diabetes as a Personal Challenge. . . . . . . . . . . . . . . . . . . . . . . . . . 3Diabetes as a National Challenge . . . . . . . . . . . . . . . . . . . . . . . . . . 3Diabetes as a Particular Challenge for Aboriginal People in Canada . . . . . . . . . . 4

National Diabetes Surveillance System (NDSS) – A Response to the Challenge . . . 5

The Original Concept . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5Feasibility. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6The NDSS Model (goals, principles, attributes) . . . . . . . . . . . . . . . . . . . 7Capacity-Building . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7Strengths and Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Structure and Governance . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Steering Committee . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10Working Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11Partnerships . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11Responsibilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Table of Contents

iv

Focus on Aboriginal Populations . . . . . . . . . . . . . . . . . . . . . . . . 15

Identifying Aboriginal Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Basic Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Partnerships . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Methods of Data Capture . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Physicians Claims File . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17Hospital File . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18Health Insurance Registry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18Data Processing at the Provincial/Territorial Level . . . . . . . . . . . . . . . . . . 19Data Processing at the National Level. . . . . . . . . . . . . . . . . . . . . . . . 21Definitions and Calculations . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23Data Validation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Facts and Figures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Prevalence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25Mortality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Accomplishments, Plans and Possibilities . . . . . . . . . . . . . . . . . . . . 32

What NDSS Tells Us . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32What NDSS Does Not Tell Us . . . . . . . . . . . . . . . . . . . . . . . . . . . 32What NDSS Will Tell Us in the Near Future . . . . . . . . . . . . . . . . . . . . . 34What NDSS May Tell Us in the Long Term . . . . . . . . . . . . . . . . . . . . . 35

Finding Answers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38

Table of Contents

v

Appendices

Appendix A: NDSS Capacity Assessment Form . . . . . . . . . . . . . . . . . . 43

Appendix B: Regional Activity . . . . . . . . . . . . . . . . . . . . . . . . . . 52

Appendix C: NDSS Steering Committee Membership 2003 . . . . . . . . . . . . 56

Appendix D: NDSS Working Group Membership 2003. . . . . . . . . . . . . . . 57

Appendix E: Memorandum of Understanding (MOU) . . . . . . . . . . . . . . . 60

Appendix F: NDSS Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . 66

Appendix G: Comparison of NDSS and Statistics Canada Counts of Deathand Population . . . . . . . . . . . . . . . . . . . . . . . . . . . 74

Appendix H: Annual Person-Level Summary File (APLSF) Data Elements . . . . . . 76

Appendix I: Canadian Standard Population Estimates - July 1, 1991 . . . . . . . 77

Appendix J: Validation Work . . . . . . . . . . . . . . . . . . . . . . . . . . 78

Appendix K: Age-Specific Prevalence by Fiscal Year, Sex and Province/Territory . . . 82

Appendix L: Age-Specific Mortality by Fiscal Year, Sex and Province/Territory . . . . 94

Table of Contents

vi

List of Figures and Tables

Figures

Figure 1: NDSS Governance Structure . . . . . . . . . . . . . . . . . . . . . . 10

Figure 2: Comparison of NDSS with Statistics Canada Deaths, April 1995 toMarch 1999, by Province/Territory . . . . . . . . . . . . . . . . . . . 18

Figure 3: Comparison of NDSS with Statistics Canada Population Counts,July 1997/98/99/2000, by Province/Territory. . . . . . . . . . . . . . 19

Figure 4: Data and Process Flow Diagram . . . . . . . . . . . . . . . . . . . . 20

Figure 5: Prevalence of Diabetes in Canadians by Fiscal Year and Sex . . . . . . . 25

Figure 6: Prevalence of Diabetes in Canada, 1999/2000, by Age and Sex . . . . . 26

Figure 7: Prevalence of Diabetes in Canada by Province/Territory, 1999/2000 . . . 28

Figure 8: Canadian Mortality Rates by Fiscal Year, Sex and Diabetes Status . . . . 29

Figure 9: Canadian mortality Rates by Age and Diabetes Status, 1999/2000. . . . 30

Figure 10: Comparison of Mortality for Canadians With and Without Diabetes,1999/2000, by Province/Territory . . . . . . . . . . . . . . . . . . . 30

Tables

Table 1: Steering Committee Membership . . . . . . . . . . . . . . . . . . . . 11

Table 2: Working Groups and Areas of Responsibility . . . . . . . . . . . . . . 12

Table 3: Percentage (%) of Physicians Paid Only on a Fee-For-Service Basis. . . . 17

Table 4: Contents of the Canadian Aggregate Datafile . . . . . . . . . . . . . . 22

Table 5: Prevalence of Diabetes in Canada by Fiscal Year, Province/Territory and Sex . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

Table 6: Canadian Mortality Rates by Diabetes Status, Fiscal Year,Province/Territory, and Sex . . . . . . . . . . . . . . . . . . . . . . 31

Table 7: NDSS Accomplishments. . . . . . . . . . . . . . . . . . . . . . . . 33

Table 8: The Scope for Enhanced Diabetes Surveillance . . . . . . . . . . . . . 36

List of figures and Tables

vii

Acronyms

APLSF Annual Person Level Summary File

BMI Body Mass Index

CABG Coronary Artery Bypass Grafting

CCHS Canadian Community HealthSurvey (Statistics Canada)

CDA Canadian Diabetes Association

CDS Canadian Diabetes Strategy

CIHI Canadian Institute for HealthInformation

CIHR Canadian Institutes for HealthResearch

DCC Diabetes Council of Canada

DM Diabetes Mellitus

EHR Electronic Health Record

F/P/T Federal/provincial/territorial(governments)

FNIHB First Nations and Inuit HealthBranch

FTE Full-time Equivalents

FY Fiscal Year

HISP Health Infostructure SupportProgram

ICD-9 International Statistical Classificationof Diseases and Related HealthProblems (v. 9)

ICES Institute for Clinical EvaluativeSciences

IDDM Insulin Dependent Diabetes Mellitus

INMD Institute of Nutrition, Metabolismand Diabetes

MOU Memorandum of Understanding

NDSS National Diabetes SurveillanceSystem

NIDDM Non-Insulin Dependent DiabetesMellitus

NWT Northwest Territories

O&M Operating and MaintenanceFinancial Mechanism (HealthCanada)

P/T Provincial/territorial governments

PIRC Performance Indicator ReportCommittee

PPHB Population and Public HealthBranch

PTCA Percutaneous TransluminalCoronary Angioplasty

RCMP Royal Canadian Mounted Police

RFA Request for Applications

RIW Resource Intensity Weight

SAS® Statistical Analysis Software

Acronyms

viii

Introduction

Diabetes is a serious, chronic, systemic diseasecharacterized by the body’s inability tosufficiently produce and/or use insulin – ahormone produced by the pancreas that assistswith the conversion of glucose (sugar) intoenergy. Without insulin, blood sugar levels rise todangerous levels, interfering with the propernourishment of body cells.

The burden of illness associated with diabetes isincreased by the fact that people with diabetesare at greater risk of other diseases than peoplewithout diabetes. This risk is strongly related tohigh blood sugar and the duration of diabetes.Chronic high levels of blood glucose can lead toheart disease and stroke, retinopathy (the leadingcause of adult blindness in Canada), kidneydisease, amputations, nerve disease (includingerectile dysfunction) and other complications.

The Government of Canada recognizes thatdiabetes is a complex health problem and anational challenge. In 1999 it pledged $115million over five years to the development of aCanadian Diabetes Strategy (CDS) to enableCanadians to benefit more fully from theconsiderable resources and expertise availableacross the country.

The CDS allows the Government of Canada tomove forward in three areas of vital importance:

� The development of a health promotion-disease prevention strategy for the entirepopulation.

� The provision of care, treatment andprevention for First Nations people onreserve and for those in Inuit communities.

� The improvement of national and regionaldata about diabetes and its complications.

Introduction

1

Diabetes has been diagnosed in over onemillion Canadians. Projections based on ouraging population indicate that the burdenof diabetes and its complications willincrease considerably.

The present report describes progress madetowards meeting the need for information thatwill assist Canada to respond in an organized andintegrated way to the challenge of diabetes. Inparticular, this report describes the NationalDiabetes Surveillance System (NDSS) – anetwork of regionally distributed diabetessurveillance systems. The network wasdeveloped, implemented and coordinatedthrough collaboration among governments,industry and several non-government agenciesand Aboriginal groups committed to reducing theburden of diabetes in Canada.

This report is the first in a series designed todescribe NDSS. As such, it delves into thebackground and history of the project more thanwill future reports. It also presents data that serveto indicate the types of information that arecurrently available or will be forthcoming fromNDSS.

Introduction

2

In 1999, the first Diabetes in Canadareport highlighted the need for betterdata, in particular, data on the prevalenceand incidence of diabetes, itscomplications, the use of health services,and the effectiveness of prevention andcontrol initiatives. NDSS represents amajor milestone in achieving this.

The Challenge of Diabetes

Diabetes as a Personal Challenge

Diabetes affects people of all ages. Type 1diabetes (formerly referred to as insulin-dependent diabetes mellitus or IDDM) usuallybegins during the first two decades of life.

In type 1 diabetes, the immune system destroysthe insulin-producing cells of the pancreas.Although the process is poorly understood, acombination of genetic factors and environmentalstressors, such as viruses, is believed to be thetrigger.

Type 1 diabetes requires treatment with insulinthroughout the rest of life and is associated with ahigh incidence of complications. Type 1 diabetesusually results in a reduction in quality of life anda shortened lifespan.

Type 2 diabetes (formerly referred to asnon-insulin-dependent diabetes mellitus orNIDDM) occurs most often in obese individualsover the age of 40. In contrast to people with type1 diabetes, who do not produce enough insulin,some people with type 2 diabetes are “insulinresistant” and are not able to use the availableinsulin to control blood sugar.

Type 2 diabetes may be controlled by weightloss, exercise and medication taken orally.However, for some people with type 2 diabetes,daily insulin injections may be required. Lifeexpectancy is also reduced in people with type 2diabetes.

A third type of diabetes – gestational diabetes –occurs during pregnancy and usually resolvesafter delivery. Gestational diabetes can result inan increased incidence of very large babies andpre-eclampsia (toxemia of pregnancy).

Gestational diabetes is a strong risk factor for type2 diabetes later in life.

Better information about risk factors for diabetes,complication rates, quality and expectation oflife, and the efficacy of prevention and careapproaches could contribute greatly to theoutlook for Canadians with diabetes.

Diabetes as a National Challenge

In 2000 in Canada, diabetes was estimated toaffect about 5% of the population aged 20 yearsand over. The direct treatment costs forpeople with diabetes have been estimated at$400 million annually for hospital care andprescription drugs. In addition, there are costs fortreating complications and for physician care,costs borne by patients, and indirect costs suchas premature death, disability, and care-giving.

Canada has previously estimated the burden ofdiabetes by using mortality data, hospital data,self-report surveys or American data. Theseprovide underestimates for various reasons,including missed diabetes-related hospitalizationsand deaths, variable response rates to surveys,participation and self-report bias, the unreliability


3

of self-report, and relatively small samples insurveys. The appropriateness of extrapolatingestimates from American data is also limited bythe differing age structure and ethnicbackgrounds of the Canadian and Americanpopulations.

Diabetes as a Particular Challenge forAboriginal People in Canada

Aboriginal people, especially First Nations, beganspeaking of a diabetes epidemic in the 1980s.Since then, Canadian research has confirmed thehigh and increasing prevalence of diabetes inthese populations.

Other features of diabetes in First Nations groupsare earlier age at onset of type 2 diabetes, greaterseverity at diagnosis and higher complicationrates.

This burden of disease is associated with uniquechallenges in prevention and care. Information isurgently needed to help tailor prevention,diagnosis and treatment to the circumstances ofAboriginal populations in Canada.


4

The National Diabetes Surveillance System

(NDSS) – A Response to the Challenge

Although diabetes has attracted the attention andefforts of various organizations and levels ofgovernment, it is apparent that the magnitude ofthe problem demands a comprehensive andcollaborative strategy for control. In 1996 anumber of physicians, diabetes educators,non-government organizations, epidemiologistsand researchers concerned about the lack ofongoing systematic information surrounding thismajor public health problem proposed a nationalsurveillance system for diabetes.

Following the 1996 discussions, the DiabetesCouncil of Canada (DCC), a coalition ofdiabetes-related non-governmentalorganizations, Aboriginal groups and federalagencies, championed a national surveillanceeffort as one of its initiatives. The NationalDiabetes Surveillance System (NDSS) SteeringCommittee was formed in 1997 and begandeveloping the concept of a surveillance systemthat would maximize the potential value ofadministrative data to support diabetessurveillance.

The Original Concept

The concept for NDSS was based on initialcontributions from Young et al.1 and Blanchard etal.2,3 It was also a response to the National Forumon Health, which encouraged the use of existingprovincial/territorial administrative databases insupport of public health activities in Canada.4

Underlying the NDSS concept is the assumptionthat the clinical path of diabetes from detection tothe treatment and management of complicationstheoretically makes it possible to track thediabetes burden through various clientinteractions (physician visits, hospitalizations,etc.) within the provincial and territorial healthcare systems.

Tracking is possible because data are capturedroutinely in the provision of publicly funded,insured health services in the variousjurisdictions and are stored in three majorprovincial/territorial administrative databases –physician claims files, hospital files, and healthinsurance registries.

NDSS — A Response to the Challenge

5

Can information systems designedprimarily as tools for budgeting and billingbe used to provide disease-specificinformation that will benefit all Canadians?YES!

Feasibility

In 1999, a pilot project conducted in the threePrairie provinces (Alberta, Saskatchewan, andManitoba) demonstrated the feasibility of theNDSS approach to data collection and thedevelopment of inter-government agreements forsurveillance using provincial administrativedata.5 The project was funded by the Governmentof Alberta and Health Canada’s HealthInfostructure Support Program (HISP), withsignificant in-kind contributions from Manitobaand Saskatchewan.

The project extended an existing diabetessurveillance system operating in Manitoba toSaskatchewan and Alberta and identified amethod for reconciling variations in the threeprovincial health information systems so that thesame core body of software could be used in allthree provinces.

The initial project anticipated the transfer ofperson-level data to a central database heldwithin Health Canada. However, this model wasabandoned after review of provincial legislationregarding the privacy of personal health data. Inits stead, a model was developed for the creationof person-specific databases of healthinformation that would remain within eachparticipating province/territory and an aggregate,anonymous data set that each province andterritory would transmit to Health Canada.

The surveillance system developed through thisproject provided estimates of the incidence andprevalence of diabetes for each year of dataprovided by the provinces/territories. It alsodemonstrated that event rates for approximately40 complications of diabetes as well as healthservices use can be generated for both thepopulation with diabetes and the populationwithout.

The surveillance model can provide ongoing,systematic collection and analysis of publichealth data, suitable for dissemination to thepublic, for health planning and for use by healthprofessionals.


6

Disease Surveillance for Public Health

Public health surveillance has been definedas “the ongoing, systematic collection,analysis, and interpretation of healthdata essential to the planning,implementation, and evaluation of publichealth practice, closely integrated withthe timely dissemination of these data tothose who need to know. . .”6

Disease surveillance collects information inorder to define the magnitude of theproblem, to portray its natural history, toidentify populations at particular risk, tomonitor changes in disease frequency andrisk factors, to evaluate the impact ofdisease control approaches, to generatehypotheses and stimulate research, and toaid planning.

Many of the techniques and methods ofdisease surveillance have been developed inrelation to both infectious and chronicdiseases. Cancer surveillance, inparticular, has spurred the development ofmethods for case ascertainment (cancerregistration), projections and recordlinkage.

One of the challenges of diseasesurveillance is to balance the need forinformation against the right to privacy.Methods developed to date havedemonstrated that responsible surveil-lance using personal information ispossible without sacrificing privacy.

The NDSS Model

NDSS represents the first time that coordinatednational use of administrative data for publichealth surveillance purposes has beenundertaken. Thus, NDSS has moved into largelyuncharted waters at both the provincial/ territorialand federal levels.

The balancing of practical considerations andepidemiological methods is at the heart of theNDSS design, which departs from other nationalhealth information systems in several importantways:

� The provinces and territories, Aboriginalgroups and Health Canada are equalpartners, with Health Canada's Centre forChronic Disease Prevention and Controlassuming a central coordinating role.

� Capacity in data capture and analysis isdeveloped within the provinces andterritories.

�NDSS is a network of regionally distributeddiabetes surveillance systems rather than acentral repository.

�Health data related to individuals are heldexclusively within the domain of theprovinces and territories, and no personalhealth data are transferred outside aprovince or territory.

� Aggregate anonymous data are transmittedto a central location.

� Long-term, ongoing data collection enableslongitudinal analyses.

� Provinces, territories and Aboriginal groupshave an important role in organizingadministrative data and in interpreting theresults of analyses.

Although these features compound the difficultyof start-up and implementation, they help buildregional capacity to enable provinces, territoriesand Aboriginal groups to use their own data toanswer questions unique to their needs. This is astrong incentive to buy-in, helping to ensure thelong-term survival of NDSS.

Capacity-Building

The capacity to participate in NDSS wasidentified as a challenge, requiring some of themost resource-intensive activities. A capacityassessment was conducted in each province andterritory to identify capacity inequities.Appendix A contains a description of the domainsassessed. Solutions to inequities includedplacement of officers in jurisdictions, placementof hardware and software, systems development,and upgrading and integration of databases.


7

NDSS Goals

�A national standardized database fordiabetes surveillance, with long-termmonitoring for diabetes-related compli-cations through the integration of newand existing databases

�Ongoing surveillance of diabetes and itscomplications in each province andterritory, and in the Aboriginal community

�Dissemination of national comparativeinformation to assist in effectiveprevention and treatment strategies bypublic health departments, Aboriginalcommunities, non-governmental organi-zations and private industry

�A basis for evaluating economic/cost-related issues regarding the care,management and treatment of diabetesin Canada

These solutions have not yet resulted in uniformcapacity across the country; several jurisdictionsstill require significant amounts of work to moveforward. However, this has not slowed the overallprogress because stakeholders have agreed to thepractice of “providing data as ready rather thanwaiting for the picture to be complete.” By early2003, eight provinces and three territories hadsupplied data to NDSS: Yukon Territory,Northwest Territories and Nunavut, BritishColumbia, Alberta, Saskatchewan, Manitoba,Ontario, Quebec, Nova Scotia and Prince EdwardIsland. The other provinces, New Brunswick andNewfoundland and Labrador, are in the processof building their infrastructure and capacity inorder to participate. Capacity also needs to beaddressed for participation of Aboriginal groups.

At the provincial/territorial level, NDSS has builtcapacity for and interest in both diabetessurveillance in particular and chronic diseasesurveillance in general. Most provinces andterritories have enhanced the surveillancecapacity demonstrated by NDSS. A summary oftheir activities in these areas is contained inAppendix B.

Strengths and Limitations

Administrative databases have been proposed assources of population surveillance of diabetes,1-3

and are held to be accurate, timely and a cost-effective source of surveillance data. Theopportunity to use them for disease surveillanceis a strong advantage both economically andstrategically over having to collect new data.Nevertheless, because administrative databasesexist primarily for purposes other than diseasesurveillance, they may not be ideal in somerespects.

Administrative data cover the entire population,can be obtained without directly contactingindividuals, are not subject to recall bias, and are

largely computerized. Publicly funded healthinsurance in Canada is not dependent on incomeand covers almost the entire Canadianpopulation. Funding exceptions are people underfederal jurisdiction (e.g. in the military, in theRCMP, and in federal correctional facilities);however, they still have access to provincial/territorial health services and their records ofservice use are included in the regionaladministrative data. Medical services outside thepublicly funded system are not included; these


8

NDSS Basic Principles

Consistency - A core set of variables iscollected in every province/territory on anongoing systematic basis.

Flexibility - Additional data can becollected within individual provinces orterritories in accordance with their uniqueneeds (e.g. data from prescribed druguse).

Quality - Data are validated and thecollection means are modified to ensureongoing data integrity across the country.

Cost-effectiveness - NDSS uses existingdata sources.

Accessibility - Data are available to thegeneral public under conditions agreed toby the Steering Committee, in accordancewith prevailing polices and regulationsregarding federal, provincial, territorial,and Aboriginal data.

Confidentiality - Personal identifiers areremoved, and only aggregate data areshared.

Responsiveness - Current information isdisseminated to public and privatestakeholders, thus enabling a promptresponse to changing trends in diabetes.

services are of limited availability in Canada, andmost are not regarded as medically necessary.

Disadvantages in using administrative databasesinclude the absence of detailed clinicalinformation and information on determinants ofhealth; duplication of information resulting fromhospital transfers and people accessing servicesin more than one jurisdiction; and currentinability to differentiate among the three types ofdiabetes. Also, administrative data includeinformation only on those who use healthservices; for people with diabetes, only thosewith a diagnosis from a health professional areincluded.

The requirement that Health Canada use onlyanonymous aggregate data for national analysesmay, at first, appear to be a serious constraint.However, because the aggregate data transferredto Health Canada can be customized to analysisneeds, the model is not limiting. Furthermore, asdiscussed later, data access guidelines allowresearchers to enter into agreements withprovinces, territories, and Aboriginal groups foruse of their data in bona fide research.


9

Attributes of the NDSS System

�Distinct roles and responsibilities forprovinces and territories, the federalgovernment, Aboriginal groups, andother parties

�A shared data dictionary for coordinatingand comparing the administrativedatabases across provinces andterritories

�Three domains of measurement:descriptive epidemiology, complicationsand co-morbidities, and health servicesutilization

�A discrete set of outcomes related tohealth services and health status thatcan generally be implemented acrossmost provinces and territories

�Ability to produce annual person-specificsummarizations of health services andhealth status information forsurveillance purposes

�The option of using various casedefinitions

�A series of aggregate datasets thatreflect the major domains ofmeasurement and measured outcomes,and a strategy for sharing data withparties outside the provinces orterritories where the person-specificdata are held

�Software to run the system

�The ability to conduct longitudinalanalyses

NDSS represents the first time that acoordinated national use of administrativedata for public health surveillancepurposes has been undertaken.

Structure and Governance

The NDSS governance structure (Figure 1)includes a multi-stakeholder Steering Committee,several working groups, Aboriginal communitygroups, national coordination and technicalsupport based at Health Canada, and technicalstaff within each province and territory.

Steering Committee

The Steering Committee (Table 1) is the maindecision-making body of NDSS. The SteeringCommittee reviews all NDSS activities, includingrecommendations by working groups, and

coordinates the publication and dissemination ofinformation products directly resulting fromNDSS activities. This body also acts asgatekeeper for NDSS national data, determiningunder what conditions NDSS-related data are tobe made available to partners and third parties,with appropriate input and direction from dataoriginators and custodians.

Any private-sector sponsors of NDSS may haveobserver status on the Steering Committee but donot have voting rights.


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NDSS Steering Committee

(Federal/Provincial/Territorial Governments,Aboriginal Groups, Non-Government Sector, Academia)

CanadianDiabetes Strategy

ScientificWorkingGroup

ExternalManagement

Working Group

Data Access &Publications

Working Group

TechnicalWorkingGroup

ValidationWorkingGroup

AboriginalDiabetes

Working Group

NDSS Technical Consultants

(Each province andterritory is represented)

Figure 1.NDSS Governance Structure

Table 1.Steering Committee Membership(See Appendix C for names of members)

Provincial/Territorial Governments

YukonNorthwest TerritoriesNunavutBritish ColumbiaAlbertaSaskatchewanManitobaOntarioQuebecNew BrunswickPrince Edward IslandNova ScotiaNewfoundland and Labrador

Non-Government Organizations

Canadian Diabetes AssociationCanadian Institute for Health InformationCanadian Institutes of Health ResearchDiabetes Council of Canada

Aboriginal Groups

Assembly of First NationsCongress of Aboriginal PeoplesInuit Tapiriit KanatamiMétis National CouncilNational Aboriginal Diabetes Association

Federal Government

Health Canada – Centre for ChronicDisease Prevention and ControlHealth Canada – First Nations & Inuit HealthBranchStatistics Canada

Academics/Clinicians (2)

Note: GlaxoSmithKline Inc. is a pioneering sponsor ofNDSS and has observer status on the NDSS SteeringCommittee

Working Groups

Six working groups meet independently asneeded and report to the NDSS SteeringCommittee. Working group activities andresponsibilities are presented in Table 2 andcurrent members are listed in Appendix D.

Partnerships

Partnerships are central to the NDSS, which hasset a number of precedents in this area.Agreements are in place with some Aboriginalgroups, the Canadian Institutes of HealthResearch, Health Canada, and the provinces andterritories.

During 2000 to 2002, Health Canada and eachof the 10 provinces and 3 territories signedMemoranda of Understanding (MOUs), which setforth the terms for administering federal fundingfor NDSS under the direction of the SteeringCommittee and through Health Canada’sOperating and Maintenance (O&M) financialmechanism. The form of the MOUs is containedin Appendix E.

Three-way partnership activities amongAboriginal groups (First Nation, Métis, Inuit orother Aboriginal people in rural and/or urbanlocations), Health Canada and the respectiveprovincial or territorial health ministry began in2001. So far, MOUs have been signed in tworegions – all First Nations in British Columbia andthose in one area of Quebec.


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Table 2.Working Groups and Areas of Responsibility

External Management Working Group� guides interactions with key external stakeholders� oversees efforts to obtain non-federal funding� manages all other aspects of public relations� developed agreements between governments for data activities� developed a duality of interest policy� developed guidelines for fundraising and sponsorship

Data Access and Publications Working Group� develops policies around conditions of NDSS data access, ownership, and publication� develops an annual publishing plan

Aboriginal Diabetes Working Group� promotes the development of the Aboriginal component of NDSS� provides technical leadership� provides guidance in relation to Aboriginal data ownership, access, and privacy� guides the development of a Memorandum of Understanding (MOU) between Aboriginal partners, respective

provinces/territories and Health Canada

Validation Working Group� advises the NDSS Steering Committee on standardization of the surveillance case definition� determines which variables are to be collected� decides on methods to be used for database validation

Scientific Working Group� provides support and advice to the Steering Committee on research initiatives/approaches to improving diabetes

surveillance and analysis of NDSS data� focuses on the state of knowledge of diabetes

Technical Working Group� focuses on the methods and algorithms for data development and programming� is responsible for the evolution of the NDSS software� translates into practice the scientific ideas proposed by the validation and scientific groups� fosters innovations for generating improved data products

Technical Consultants� responsible for the implementation of the NDSS software and hardware� documents the unique characteristics of the provincial/territorial databases


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Responsibilities

Health Canada

Under the MOUs, Health Canada, through itsCentre for Chronic Disease Prevention andControl, agrees to provide the resources neededto coordinate NDSS activities nationally. Theseinclude, but are not limited to, monitoring ofnational NDSS-related staff, infrastructuresupport of national NDSS-related personnel,participation on committees and working groupsas appropriate, coordination of standardized dataextraction and linkage, and establishment andmaintenance of the central database of aggregatedata from the provincial/ territorial/Aboriginalpartners. Coordination also involves liaising withthe various working groups, providing secretariatsupport, and promoting a coordinated work plan.In addition, Health Canada liaises withnon-governmental partners with regard toprivate-sector funding for activities approved bythe Steering Committee.

Provinces and territories

As signatories to the Memorandum ofUnderstanding, all 13 provinces and territoriesare responsible for administering NDSS activitiesin their area, notably the maintenance of requiredsoftware and the transfer of aggregate data toHealth Canada. Provinces and territories alsomonitor regionally located NDSS-relatedpersonnel, provide infrastructure support forregional NDSS-related personnel, and participateon committees and working groups asappropriate. Provinces and territories areresponsible for submitting resource allocationinformation for each year to the SteeringCommittee.

Aboriginal groups

The Aboriginal partners in NDSS have severalroles. Initially, Aboriginal partners facilitateidentification of their members in NDSS datasetsprepared by the provinces and territories.Subsequently, Aboriginal partners contributeknowledge about and network within theirmembership to support data interpretation, useof appropriate communication styles, anddissemination. Aboriginal partners also anticipatea leadership role in applying NDSS findings toplan, implement, and evaluate diabetesstrategies and to develop policy.

Guidelines

Appendix F presents guidelines relating to threeareas – duality of interest; fundraising andsponsorship; and data access and publication.Highlights from each area are presented below.

Duality of interest

Within the context of membership on the SteeringCommittee, a situation involving duality ofinterest may arise in two ways: first, if a memberhas the opportunity to influence the businessdecisions of the Steering Committee in a way thatcould lead to personal financial gain for themember or his/her family; and second, if amember’s interests are opposed to the interests ofthe Steering Committee.


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Disclosure of duality of interest is an agenda itemfor all meetings, and such disclosures arerecorded in the minutes. A member shall not voteon, approve or recommend approval of atransaction or contract with which he or she isassociated. Therefore, members with a conflict ofinterest are required to absent themselves fromthe meeting during discussion of any itemspertaining to the conflict.

Fund-raising and sponsorship

A unique aspect of NDSS is the opportunity forprivate-sector sponsorship. One of the roles of theCanadian Diabetes Association (CDA), anon-governmental founding partner, was themobilization of private sector sponsorship, mostnotably that of GlaxoSmithKline Inc. in 1999.

Principles for fund-raising have been establishedto ensure an open and transparent process.Private sponsors have no influence on thedecisions and activities of NDSS, and cannotdirectly benefit from public knowledge generatedby NDSS. Eligible sponsors are required toprovide long-term commitment and to have anappropriate fit between NDSS and corporatebusiness priorities.

Data access and publication

This policy outlines the procedures believednecessary to process research requests efficientlywhile ensuring both consideration of the publicinterest and full compliance with legislation. Thepolicy covers data collected, linked and/oranalyzed with the assistance of NDSS resources.Data and data products that can be accessed areunpublished aggregate data that reside at HealthCanada, person-level data that reside atprovincial and territorial sites, and NDSSprogramming codes.

The guidelines for data access cover:

� guiding principles (e.g. that the provinces,territories, and Aboriginal groups must be inagreement with any and all uses of theirrespective data);

� uses of data and products;

� ethical review for access;

� requirements to request access;

� disclosure (i.e. before release, reportscontaining any data requested throughNDSS, or reports generated using NDSSdata will be reviewed);

� protection of privacy and confidentiality; and

� destruction.


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Focus on Aboriginal Populations

The prevalence of diabetes in some First Nationspopulations is three to five times the nationalrate. Rates are even higher in some First Nationslanguage groups, and there is a north-southgradient, with people in the south having higherdiabetes rates than those in isolated northerncommunities.7-9

Rates of diabetes in other Aboriginal groupsvary.9-11 In the 1991 Aboriginal Peoples’ Survey,self-reported diabetes prevalence was 5.5%among Métis and 1.9% among Inuit.10

Diabetes also develops at an earlier age amongFirst Nations people and, in recent years, type 2diabetes has been diagnosed in children.12

Almost one-third of First Nations women withdiabetes report first being given the diagnosisduring pregnancy.7

Factors that pose a risk to Aboriginal populationsare both heredity and lifestyle. The relativelyrecent shift from traditional diets high in animalprotein to “modern urban diets” high incarbohydrates, combined with decreasedphysical activity, result in high levels of obesitythat compound pre-existing risks for diabetes.

NDSS contains an “Aboriginal component”intended to address some of the uniqueinformation concerns of these populations. NDSShas endorsed the need to have Aboriginal peopleinvolved in its development.

Identifying Aboriginal Data

To identify records as belonging to an Aboriginalgroup, data routinely collected and managed bythe province or territory are linked to theAboriginal group’s membership information inthe province or territory. A temporary “identifier”is attached to selected records to allow extractionof Aboriginal-specific data. Routine NDSScalculations and data aggregation are thenapplied, and approved aggregate data files aresubmitted to Health Canada for nationalreporting.

A more complex and outstanding issue is how toidentify and then create diabetes surveillancedata for the urban Aboriginal population thatincludes non-status Indians.

Basic Principles

After review of the proposed NDSS model in1999, Aboriginal representatives’ questionsabout using personal health information led tothe development of principles specific to theirinterests. These principles define aspects of thepartnership arrangement and augment the basicNDSS principles. In particular, they address theneed to identify and then minimize possible risksassociated with the introduction of nominalmembership lists into NDSS processes.Specifically, the Aboriginal partners require thefollowing:

� Consent - An Aboriginal organization withlegitimate authority to represent a uniquegroup of Aboriginal people would provideconsent before any work begins in diabetessurveillance.


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In some Aboriginal populations, the preva-lence rate of diabetes is three to five timesthe national rate.

� Confidentiality - The province or territorywould not release Aboriginal data withoutthe Aboriginal partner’s approval.

� Privacy - Aboriginal groups would haveenforceable assurances that the privacy oftheir membership lists and that of membersis protected when their information is usedto identify Aboriginal people withinpre-existing NDSS datasets.

�Data Storage - Aboriginal partners wouldspecify where, for how long, and under whatconditions data storage occurs, if at all.

�Ownership and Control - Aboriginal groupswould hold principal ownership of NDSSnon-nominal, person-level data and wouldspecify when and under what conditionsothers may have access to the data.Aggregate data would be released fornational reporting, and access by otherswould be controlled by the MOU and existingNDSS policy.

Partnerships

The proposed collaboration involves three-waypartnerships among Aboriginal groups,provinces/territories and Health Canada. Theprocess for forming these partnerships isinfluenced by the priorities of all three parties andby each Aboriginal group’s unique political andsocial history that defines inter-governmentalrelations. Rarely does either the history or currentrelations facilitate discussion.13

Staff shortages and constraints can interfere withmoving the recognized problem of diabetes intothe active phase of a decision-maker’s agenda.Also, Aboriginal leaders are often fully focused onmore urgent political or social threats and mustfollow the established protocol forcommunicating issues to membership andgaining their support in new initiatives. Yet,despite these difficulties, concerns are beingallayed and partnerships are forming.

Progress includes development of two MOUs.One MOU in Quebec involves the Cree Board ofHealth and Social Services of James Bay; theother MOU in British Columbia involves the FirstNations Chiefs’ Health Committee, First NationsSummit. In these regions, there was apre-existing infrastructure and a data-sharingprocess ready to accommodate the opportunity tocarry out diabetes surveillance. Other FirstNations, Métis and Inuit groups are consideringor are involved in developing MOUs to participatein diabetes surveillance. Though this work willtake time, the models for an MOU in BritishColumbia and Quebec will assist this process.


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Methods of Data Capture

NDSS uses person-specific administrativedatabases organized originally to supportpayment of claims under publicly funded healthinsurance. In Canada, publicly funded healthinsurance is mainly the responsibility of theprovinces and territories and covers almost theentire population.

NDSS uses three types of databases, which existin all provinces and territories and can providedata by fiscal year: the physician claims file, thehospital file, and the health insurance registry.These databases are linked by a unique lifetimeidentifier that is usually an encryption of thepersonal health insurance number.

In each province and territory, the files arerestricted to residents to avoid duplicate countingof people, since tracking individuals who live inone jurisdiction but obtain much of their care inanother or who migrate back and forth betweenprovinces is problematic. NDSS does not yet useother data sources, such as prescription drug usedatabases, that are either not consistent or notavailable across the country.

The provincial/territorial physician claims file andthe hospital file supply numerator data; thehealth insurance registry supplies denominatorsand socio-demographic characteristics.

Physician Claims File

Physicians’ services performed in hospital, officeor clinic are captured in the physician claims file.With few exceptions, each physician claimcontains only one diagnosis, coded usingICD-9.14 Some provinces allow up to threediagnostic codes per claim. NDSS uses only the

first code for consistency. This may result insystematic under-reporting but generatescomparable data for describing trends.

The physician claims file is central to the diabetescase-ascertainment algorithm and to algorithmsbeing developed for estimating complications andhealth services use. Information in the claims fileabout payments for services may also be usefulas algorithms are developed to refine estimates ofthe economic burden of diabetes.

Table 3.Percentage (%) of Physicians Paid

only on a Fee-For-Service Basis

Fiscal Year

Province 1995/9615 1999/0016

British Columbia 92 79Alberta* 98 98Saskatchewan 84 82Manitoba* 47 40Ontario* 94 93Quebec 62 61New Brunswick 52 58Prince Edward Island* 92 63Nova Scotia* 74 62Newfoundland andLabrador

73 46

* shadow billing

A limitation of the claims file is that physiciansnot paid on a fee-for-service basis are not alwaysrequired to submit medical claims. Table 3shows the distribution by province of physicians


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paid only on a fee-for-service basis. Otherpayment schemes include salary, contract,capitation, and partial fee-for-service. Alternativepayment of physicians is more frequent for somespecialties, in remote areas, and for someprimary health care centres. However, in somejurisdictions physicians under alternativepayment schemes are still expected to remitservice information, otherwise known as “shadowbilling”.

Hospital File

Information about each hospital visit or stay iscollected at discharge using an abstracting form.Diagnoses are coded using ICD-9 or ICD-9-CM.All jurisdictions except Quebec currently submitdischarge abstract data to the Canadian Institutefor Health Information, where data quality editsare conducted17 and the data are compiled intothe Discharge Abstract Database (DAD). Quebecuses a similar process for data quality checks.

The diagnostic information is used in the diabetescase ascertainment algorithm (although fewerthan 2% of cases have only a hospitaldiagnosis18,19). Although there maybe several diagnostic codes for asingle admission, only the first threeare used because of data limitationsin some provinces and territories.Also, records relating to day surgeryare excluded because some provincesdo not include these procedures intheir hospital discharge files.

Health Insurance Registry

The registry contains a record foreach person entitled to coverageunder the provincial/ territorial healthinsurance scheme. NDSS abstractssex, date of birth (to calculate age)

and geographic code from this file (even thoughthe information may also exist in the other files).

The registry is also used to determine whetherpeople using hospital or medical services areresidents. Hospital records or records ofphysicians’ services with health insurancenumbers not in the registry file for that year areexcluded from further processing.

The registry file supplies denominators for ratecalculations. Therefore, assessments of theregistry’s accuracy for this purpose are needed. Inparticular, how closely this file represents thepopulation depends upon its being regularlyupdated with deaths and migrations.

Generally, the date of death, or informationallowing its estimation, is recorded in the registry.Comparisons of provincial/territorial death countswith counts from Statistics Canada (Figure 2 andAppendix G) have demonstrated that, for mostjurisdictions, the registry is updated with deathinformation. Some problems have been identifiedwith updates in British Columbia.


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YU NT BC AB SK MN ON PE NS

0

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Figure 2.Comparison of NDSS with Statistics Canada Deaths,

April 1995 to March 1999, by Province/Territory

Comparisons of the mid-year population countsavailable from the registries with mid-yearestimates available from Statistics Canada(Figure 3 and Appendix G) have demonstratedthat, for most jurisdictions, registry updatingprovides population counts within 1% of theStatistics Canada estimates.

Problems identified in British Columbia areassociated with the premium system used there.Some duplicate counting of residents occurred inOntario, but the numbers were within 4% ofStatistics Canada estimates. Quebec’sregistration file was used only for people withdiabetes. Therefore, for this report, Quebec hasused estimates from l’Institut de la Statistique duQuébec rather than the registry population as thedenominator. In Nunavut, death data were notyet available for this report. All other provincesand territories were able to use the registry as adenominator, thereby more accurately reflectingthe population that generated the case countsobtained from the physicians’ services claims andhospital files.

Annual population counts are consistently higherthan the mid-year counts, by 4% for theprovinces and 8% for the territories (Appendix G),reflecting the difference between counting peopleand counting person-years; the sum ofperson-years will approximate the mid-yearpopulation count, but a count of people will

include those who reside in aprovince or territory for any portion ofa year. This effect is most evident inthe 40-55 age group (because ofmigration) and in the 80+ age group(because of deaths).

Data Processing at theProvincial/Territorial Level

Data processing at the provincial/territorial level, for which programsusing SAS® (Cary, NC) software havebeen developed, involves five discretephases, illustrated in Figure 4 andsummarized below:

� Select required data elements andtranslate provincial/territorial dataelement names/ types/codes intothe NDSS standard.

� Summarize each data source into one recordper person per year based on selectedcriteria.

�Merge the registry, hospital and physiciansclaims data, matching the unique identifier.

� Apply the diabetes case definition.

� Summarize the data by age group and sexand apply the appropriate calculations.

The first phase is customized to each jurisdiction,but all the remaining tasks are identical across allprovinces and territories.


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YU NT BC AB SK MN ON PE NS

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Figure 3.Comparison of NDSS with Statistics Canada Population

Counts, July 1997/98/99, by Province/Territory

Figure 4.Data and Process Flow Diagram

Physician Claims Hospital RegistryPhase 1

Conversion/Translation

� unique identifier

� date of service

� diagnosis code

� fee item(service/procedure)

� amount paid

� unique identifier

� admission date

� separation date

� diagnosis codes (up to 16)

� procedures (up to 12)

� inpatient/day surgery

� Unique identifier

� sex

� Province/territory

� date of birth (age)

� geographic code

� fiscal year

� days of coverage in year

� date of death

� Select required data elements

� Rename and translatevariables into NDSS standarddefinitions

� Sort data by fiscal year

� Multiple records per person peryear permitted

Optional

� location where serviceprovied (hospital/office)

� physician specialty

Optional

� resource intensity (RIW)

� RIW exclusion factor

Optional

� insurance start date

� insurance end date

� insurance end reason

� insurance start reason

Data elements added:

� count of claims withdiagnosis of diabetesrecorded

� service date on first claimin fiscal year with diabetesas diagnosis

� service date of secondclaim in fiscal year withdiabetes as diagnosis


� separation date for earliesthospital stay in year withdiabetes as one of thediagnoses

� total number of hospitaldays during stay


� nonePhase 2

Summarization

� Sort data by ID and date

� Summarize data into one recordper person per year (linkagerequires unique identifier)

� Add/calculate data elements

� One file per fiscal year

Phases 3 and 4Create APLSF Dataset

� Merge (link) data sets by ID

� Exclude hospital and physiciandata with invalid ID

� Apply diabetes case definitionto all years of data forindividual

Phase 5Create Aggregate Data

� data summarized

� age groups can be specified

� optional cell suppression forcells with 1-5 observation


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Annual Person Level Summary File (APLSF)


� case date for diabetes case definition

� historic data elements from previous years

� days with diabetes in current year

� days without diabetes in current year

Incidence and Prevalence Output

� by P/T, age group, sex and year

� incident, prevalent and non-cases

� person-years at risk for incident,prevalent and non-cases

� incidence and prevalence rates

Mortality Output File

� by P/T, age group, sex and year

� deaths among diabetics and non-diabetics

� person-years

� mortality rates for diabetics andnon-diabetics

� rate ratio

The first phase, using a copy of theprovincial/territorial file, is to reduce the numberof variables retained in the file and to translatevariable names from provincial/territorial-specificcoding standards to a shared diabetes datadictionary. The remaining data processing steps(see Figure 4) summarize individual transactiondata into an annual summary, build the annualperson-level summary file (APLSF) and generateaggregate datasets.

A separate APLSF is constructed for each year.The APLSF is composed of a single recordsummary for each person in the registry fileregardless of diabetes status or whether insuredservices were used in the year. The recordsummary documents the year’s medical andhospital information for each person, includingevidence needed to determine whether the casedefinition was triggered. As NDSS develops,complications and health services use will beincluded in this file.

The APLSF retains personal health identifiers (orencrypted variants), allowing longitudinaltracking of individuals over time and, withappropriate consents, linkages to other datasets.

In a final step, additional variables are added tothe file, reflecting (where they exist) selected datafrom the individual’s record in the APLSF file forprevious years; this is of particular importance indetermining whether a specific diagnosis is newor pre-existing.

Because the APLSF holds data on individuals aswell as information such as dates of diagnosis,birth and death, the file is regarded as personalhealth data under the authority of existinglegislation and policy directives within eachprovince and territory. This makes the APLSF fileinappropriate to distribute outside the province orterritory.

The provinces and territories provide dataaggregated by age group and sex to the nationaloffice of NDSS (Health Canada). Data aresuppressed where the number of individualsrepresented in a cell is smaller than five. The dataare provided in a SAS® dataset, which isdescribed in Table 4. Definitions for the variablesin the APLSF dataset are provided in Appendix H.

The APLSF provides considerable flexibility inhow aggregate datasets might be created. Forexample, age groupings can be arbitrarily definedto suit analytic need, provided that the analyticneed is not inconsistent with the need to ensurethe confidentiality of personal health data.

Data Processing at the National Level

The aggregate datasets provided by the provincesand territories to Health Canada are the primarysurveillance products arising from NDSS. Asthese products are not personal health data underthe definitions of existing provincial policies orlegislation, they are suitable for distribution anddissemination.

The national calculations are the responsibility ofthe national office. To adjust for the effects ofdiffering age distribution on the rates, theprovincial/territorial data are standardized byspecific age group to the 1991 Canadian Censuspopulation (Appendix I).


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Table 4.Contents of the Canadian Aggregate Datafile


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Category Data Element Description Data Element Name

Demographic variables � Province or Territory . . . . . . . . . . . .� Fiscal year of Data. . . . . . . . . . . . .� Sex . . . . . . . . . . . . . . . . . . . .� Age Group . . . . . . . . . . . . . . . .

PTYEARSEXAGEGRP

People with a diagnosis of diabetes incurrent year

� Incident Cases: number of people withDM diagnosis in the current year . . . . . .� Person-years of observation after DM

diagnosis in current year . . . . . . . . . .� Person-years of observation before DM

diagnosis in current year . . . . . . . . . .� Incidence Rate . . . . . . . . . . . . . .

INCASE

INPYODM

INPYONDMIR

People with a diagnosis of diabetesprior to current year

� Prevalent Cases: number of people with DMdiagnosis prior to current year . . . . . . .� Prevalent Person-years. . . . . . . . . . .

PREVCASEPREVYRS

Prevalence (period) for current year � Period Prevalence Proportion . . . . . . . . PR

People not given a diagnosis of diabetes � Number of people not given a diagnosisof DM . . . . . . . . . . . . . . . . . .� Person-years Observed without diabetes . .

NONCASENONDMYRS

Mortality among people with diagnosisof diabetes

� Number of deaths among prevalentdiabetes cases . . . . . . . . . . . . . .� Person-years of observation for people

with a diagnosis of diabetes who died. . . .� Death rate for people with diabetes . . . . .

N1

D1Rill

Mortality among people without adiagnosis of diabetes

� Number of deaths among people notgiven a diagnosis of diabetes . . . . . . . .� Person-years of observation for people not

given a diagnosis of diabetes who died . . .� Death rate for people without diabetes . . .

N2

D2Rnil

Mortality comparison � Death rate with diabetes/death ratewithout diabetes (Rill/Rnil) . . . . . . . . . RR

Definitions and Calculations

Diabetes case

The case definition currently used in NDSSrequires that an individual have the following:

� one hospitalization with an ICD-9 code of250 (diabetes mellitus), selected from thefirst three diagnostic codes on the hospitalfiles, or

� two medical claims with an ICD-9 code of250 within 730 days, selected from the firstdiagnostic code.

The case date is currently defined as the earliestdate at which the case definition is met.

Age

Age is calculated as age as of the end of the fiscalyear. The age groups for national use are decadesbetween 20 and 49 (20-29, etc.) and 5-year agegroups thereafter (50-54, etc.) to age group85+.

Prevalence

Prevalence is the probability that an individualwithin a population will have diabetes during theyear.

In the NDSS, diabetes prevalence is calculated asfollows:

� (total number of people with a diabetes casedate prior to March 31 of the current fiscalyear) ÷

� (total population count for the current fiscalyear).

The denominator uses the count for the entireyear rather than the mid-year estimate, therebyincluding people who migrate or die during theyear, since they are included in the numerator.

In Quebec, however, the denominator is thecensus-based population estimate provided bythe ministère de la Santé et des Services sociauxdu Québec and calculated by the Institut de lastatistique du Québec.

Mortality

The mortality rate refers to the force of diabetesmortality for the total population. This measurecan refer either to deaths due to diabetes or todeaths of people with diabetes. Within NDSS, themortality rate is calculated separately for peoplewith diabetes and those without diabetes. Causeof death is not available, and therefore anymortality analyses are based on ALL causes ofdeath and not just deaths due to diabetes.

In NDSS the mortality rate among people withdiabetes is calculated as follows:

� (total number of deaths among people withdiabetes during the current fiscal year) ÷

� (total number of people with diabetes duringthe current fiscal year).

The mortality rate among people withoutdiabetes is calculated as follows:

� (total number of deaths among peoplewithout diabetes during the current fiscalyear) ÷

� (total number of people without diabetesduring the current fiscal year).

The mortality rate ratio is calculated as follows:

� (death rate among people with diabetes) ÷

� (death rate among people without diabetes).

In Quebec, the number of deaths among peoplewithout diabetes is derived from the Fichier desdécès (vital statistics, deaths), from which thenumber of deaths among people with diabetes issubtracted. The denominator for the rate among


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people with diabetes is the difference betweencensus-based population estimates and thenumber of people with diabetes.

Data Validation

Since much of the administrative data used byNDSS was designed for billing purposes(particularly physicians’ services) rather than fordisease surveillance, the diagnoses capturedrequire validation. Such validation is ongoing andtakes several forms. Accuracy of thecase-definition algorithm is evaluated against agold standard that allows calculation of measuresof specificity and sensitivity, and then thesemeasures are examined in various ways:

� across jurisdictions

� against various gold standards

� over time

� for incident versus prevalent cases

� for special populations

� for designated complications

� for health services use

The case definition within NDSS is flexibleenough to incorporate improvements in thealgorithm suggested by the validation process.

Validation of the NDSS algorithm began withpublications in 1991 and 1996 and is stillongoing. Currently, nine of the 13 jurisdictionsare participating in validation studies. Recently,the NDSS and the CIHR Institute of Nutrition,Metabolism and Diabetes jointly funded

population health and validation research ondiabetes.

Various gold standards have been used, includingrecords from diabetes education3 and care19

programs, the National Population HealthSurvey,20-22 a provincial health survey,19 aprovincial diabetes registry18 and medicalcharts.23 Other studies, currently under way areusing prescription records for insulin and oralhypoglycemic medication, and clinical data.

So far, validation work has indicated that

� self-reported survey data should not be usedas a gold standard, since they underestimatethe true disease burden in thepopulation;21,22

� new cases and prevalent cases are difficultto differentiate in the early years,2 and atleast five years of data are needed beforestable estimates can be obtained;6,18

� the increase in prevalence among femalesseen during the child-bearing years may be theresult of miscoding of gestational diabetes;

� sensitivity measures have been 69%,19

85%18,23 and over 95%,3 depending uponthe gold standard used and the jurisdictionwhere the study was conducted;

� specificity has been over 95% and hasvaried less than sensitivity;18,19,23

� positive predictive value has been 78% and80% in two studies of adults,18,23 but hasbeen found to be low in children;24

� sensitivity, specificity and predictive valuemay be stable for five to seven years ofdata for adults, but they fall as more yearsof data are included and prevalent casesover-accumulate.18

The validation studies and definitions aredescribed in greater detail in Appendix J.


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Validation work has substantiated the useof the NDSS algorithm for prevalence andmortality calculations using five to sevenyears of data for adults.

Facts and Figures

The following represents the first comprehensivecompilation and public dissemination of data byNDSS. The data presented below are derivedfrom the data collection period starting in1995/1996. The first two years constituted therun-in period required by the case definition.Therefore, the earliest data presented here are forthe fiscal year 1997/1998, and the most recentyear of data available for this report is1999/2000.

The information represents eight provinces andthree territories, accounting for over 95% of theCanadian population. Data from New Brunswickand Newfoundland and Labrador are notincluded in this report.

The data include both type 1 andtype 2 diabetes, as ICD-9 (code 250)does not differentiate between thetwo. However, since the data arerestricted to people aged 20 yearsand over, they largely represent type2 diabetes. Although gestationaldiabetes has its own ICD-9 code(648.0), it is often miscoded as type1/type 2 and therefore some cases ofgestational diabetes are included inthese tabulations.

Prevalence

In 1999/2000, 5.1% of Canadians (1,196,370)aged 20 and over were living with diagnoseddiabetes (Figure 5). This rate is higher than theself-reported rate of diabetes among people aged20 and over found by the National PopulationHealth Survey in 1998/99 (3.9%),25 or even theself-reported rate found by the more recentCanadian Community Health Survey 2000/01(4.7%).25 This is consistent with validationstudies21,22 showing that self-report survey dataunderestimate the true disease burden in thepopulation.

NDSS prevalence estimates represent diagnoseddiabetes among health services users. Prevalencemay be underestimated by 30% as a result ofsubclinical, undiagnosed diabetes.26

Facts and Figures

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In 1999/2000, 5.1% of Canadian adultswere living with diagnosed diabetes.

1997/1998 1998/1999 1999/20000%

1%

2%

3%

4%

5%

6%

Female Male Both

* crude rate per 100 persons aged 20+ (not age standardized)

%o

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Figure 5.Prevalence* of Diabetes in Canada by Fiscal Year and Sex

Prevalence over time

Figure 5 suggests increasing prevalence. Thisincrease is expected for a chronic condition suchas diabetes that has a lengthy disease duration.However, at this early stage of diabetessurveillance, the observed increase in prevalenceis due, in part, to detection of cases diagnosedbefore the start of observation (1995/1996).Future NDSS reports will be based on more thanfive years’ of data, allowing a clearer distinctionbetween prevalent (existing) and incident (new)cases.

Prevalence by sex

Figure 5 also demonstrates that diabetes is morecommon among Canadian men aged 20 andolder (5.4%) than among women (4.9%). Anexception to the male pre-ponderance occurs in

the child-bearing years (20-39), where cases ofgestational diabetes may be miscoded astype 1/type 2 diabetes (Figure 6).

Prevalence by age group

For both sexes, prevalence increases with age,peaking in the 75-79 age group at 15.5%(17.4% among males and 14.2% amongfemales) (Figure 6). People aged 65 and overaccount for almost 50% of diabetes cases butrepresent only about 15% of the population aged20 and over. The slight decrease in prevalence inthe oldest age groups (80+) may be the result ofmortality associated with diabetes or an artefactof limiting the number of conditions coded pervisit; increased co-morbidity at older agesincreases the likelihood that conditions otherthan diabetes will be recorded.

Facts and Figures

26

20-29 30-39 40-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+0%

5%

10%

15%

20%

Male

Female

* age and sex specific rate per 100 persons aged 20+

%o

fp

op

ula

tio

nag

e20+

Figure 6.Prevalence* of Diabetes in Canada, 1999/2000, by Age and Sex

Prevalence by region

Table 5 presents age-standardized prevalencerates by fiscal year, province/territory and sex forpeople aged 20 years and older. Detailedprevalence data by age, sex, jurisdiction andfiscal year are found in Appendix K. Figure 7compares the provinces and territories using age-sex standardized rates and 95% confidenceintervals.

For the majority of jurisdictions, age-sex adjustedprevalence ranges from 4.0% to 5.5%. Apparentdifferences among the provinces should beinterpreted with caution because of the effects ofdifferent populations, different data collectionprocedures, and variations in the likelihood ofdiagnosis. For example, Manitoba’s higher ratemay reflect the fact that Aboriginal peoplerepresent a relatively high proportion of itspopulation (13%)27 and that diabetes prevalenceamong Aboriginals is 3 to 5 times higher than thenational rate.7 This emphasizes the need to

identify specific populations at high risk ofdiabetes, such as Aboriginal groups.

Differences between provinces and territoriesmay not result from differences in the level ofdiabetes in the population. For example, theterritories have the highest proportion ofAboriginal peoples (22% in the Yukon, 46% inthe Northwest Territories and 81% in Nunavut)27

but the lowest prevalence rates. This may bebecause of the inability of some administrativedata to capture diabetes diagnoses outside thefee-for-service payment system. To investigatethis, Nunavut is conducting a pilot project thatincludes addition of community health nurse datato NDSS, and other validation projects areunderway (Appendix J).

Finally, differences between provinces andterritories may reflect differences in the likelihoodof diagnosis. For example, the three provinceswith the highest prevalence (Manitoba, NovaScotia and Ontario) also have the mostestablished diabetes programs.28

Facts and Figures

27

1997/1998 1998/1999 1999/2000

Female Male Female Male Female Male

Yukon 3.1 3.2 3.6 3.4 3.9 3.8

Northwest Territories 3.4 3.1 3.7 3.5 3.9 4.0

British Columbia 3.4 4.1 3.8 4.5 4.0 4.8

Alberta 3.2 3.8 3.6 4.2 3.8 4.5

Saskatchewan 3.7 4.4 4.0 4.8 4.1 5.0

Manitoba 4.4 4.8 4.9 5.3 5.3 5.8

Ontario 3.9 4.7 4.3 5.1 4.7 5.5

Quebec 3.8 4.6 4.1 5.0 4.3 5.2

Prince Edward Island 3.4 4.4 4.0 5.1 4.1 5.2

Nova Scotia 4.4 5.2 4.8 5.6 4.9 5.8

CANADA 3.8 4.5 4.1 4.9 4.4 5.2

Table 5.Prevalence* of Diabetes in Canada, by Fiscal Year, Province/Territory and Sex

* Rate per 100 people aged 20+, age standardized to 1991 Canadian population

Since one of the goals of NDSS is comparableinformation on diabetes, the impact of theseissues is being more closely examined. In thefuture, we expect to have a better understandingof differences in systems that may affect the datacollection and, ultimately, regional comparisons.

Mortality

In 1999/2000, the death rate among Canadianadults with diabetes was 1,393 per 100,000(age-sex standardized to the 1991 Canadianpopulation). This includes deaths due to externalinjuries or other causes that may not be directlyrelated to diabetes. This all-cause mortality of41,483 Canadians aged 20 years and over withdiabetes is 6.5 times the 1999 mortality count of

6,131 Canadians aged 20 and older whoseleading cause of death was listed as diabetes.29

The all-cause mortality rate seems to supportpast calculations estimating that the number ofdiabetes-related deaths is over five times thenumber of deaths with diabetes coded as theunderlying cause.30 Studies have demonstratedthat only 28% of death certificates with anymention of diabetes were coded with diabetes asthe underlying cause of death31,32 and thatdiabetes was not mentioned at all for 41% ofpeople with diabetes who died.31

Facts and Figures

28

0.0%

1.0%

2.0%

3.0%

4.0%

5.0%

6.0%

YT NT NU BC AB SK MB ON QC PE NS

Canada

*age-sex standardized to 1991 Canada population

Pro

po

rtio

no

fP

op

ula

tio

nA

ge

d2

0+

Figure 7.Prevalence* of Diabetes in Canada by Province/Territory, 1999/2000

Canadian adults with diabetes are twice aslikely to die prematurely, compared topersons without diabetes.

Mortality over time

Figure 8 shows the age-standardized death ratesby fiscal year. In all years, the death rate issignificantly higher among those with diabetesthan those without for both sexes. While thedeath counts are increasing, the mortality amongpeople with diabetes relative to those without isstable over time (see Appendix L for mortality rateratios).

Mortality by sex

Across all three fiscal years, male mortality isconsistently higher than female mortality amongboth people with diabetes and those without.However, mortality among people with diabetesrelative to those without is slightly higher forwomen (mortality rate ratio 2.11) than for men(mortality rate ratio 1.87).

Mortality by age group

Figure 9 shows that for all age groups the deathrate for people with diabetes is higher than thedeath rate for those without. Figure 9 also showsthe rate ratio, which compares mortality ratesamong people with and without diabetes. Therate ratio is higher in the younger age groups andgradually decreases for the older ones. Thismeans that a 35-year-old Canadian with diabetesis 4 times more likely to die than a person withoutdiabetes, whereas an 85-year-old Canadian withdiabetes is 1.4 times more likely to die than aperson without diabetes.

Mortality by region

Canadian adults with diabetes are twice as likelyto die prematurely as adults without diabetes.Figure 10 demonstrates that this age-sexstandardized ratio is between 1.8 and 2.1 for the

majority of jurisdictions. The threesmallest jurisdictions (Prince EdwardIsland, the Northwest Territories andthe Yukon territory) have a rate ratioless than 1.5. The smallestjurisdictions have zero death countsin many of the younger agecategories, artificially reducing theirage- standardized mortality rates.

Comparisons of mortality rates byregion are influenced by manyfactors. Since people with diabetesare older than the general population,age-standardization makes the ratesmore comparable. The mortality rateratio provides comparison of themortality of people with diabetesrelative to those without diabetes.Table 6 presents age-standardized

Facts and Figures

29

Female Male Female Male Female Male0

500

1000

1500

2000

1997-1998 1998-1999 1999-2000

Persons with diabetes

Persons without diabetes

* age standardized to the 1991 Canadian population

de

ath

sp

er

10

0,0

00

po

pu

lati

on

*a

ge

20

+

Figure 8.Canadian Mortality* Rates by Fiscal Year,

Sex and Diabetes Status

mortality rates by fiscal year,province/territory, sex and diabetesstatus. Detailed mortality data byage, sex, jurisdiction and fiscal yearare found in Appendix L.

National Impact

NDSS data begin to paint a picture ofthe burden of diabetes in Canada.Diabetes is a large and growinghealth problem in Canada.Prevalence is increasing and isparticularly high among older adults.The mortality associated withdiabetes is considerable. The nextNDSS report will contain incidencedata that can be used to study riskfactors for use in projection models.

Facts and Figures

30

0%

5%

10%

15%

20%

25%

30-39 40-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+

Age Group

0.0

1.0

2.0

3.0

4.0

5.0

Deaths with Diabetes Deaths without Diabetes Rate Ratio

Ag

eS

pe

cif

icD

ea

thR

ate

Ra

teR

ati

o

Figure 9.Canadian Mortality Rates by Age and

Diabetes Status, 1999/2000

YT NT BC AB SK MB ON QC PE NS

0.00

0.50

1.00

1.50

2.00

2.50

Canada

* age-sex standardized to 1991 Canadian population

Rati

oo

fm

ort

ality

rate

*w

ith

:wit

ho

ut

dia

bete

s

Figure 10.Comparison of Mortality* for Canadians With and

Without Diabetes, 1999/2000, by Province/Territory

Facts and Figures

31

1997/1998 1998/1999 1999/2000


Yukon DiabetesNo diabetesRatio

1.690.642.60

1.450.861.70

0.990.781.30

0.710.990.70

0.910.661.40

1.371.151.20

Northwest Territories DiabetesNo diabetesRatio

1.801.011.80

0.591.640.40

1.781.391.30

0.861.660.50

1.360.761.80

0.361.080.30

British Columbia DiabetesNo diabetesRatio

1.110.562.00

1.590.871.80

0.970.521.90

1.470.801.80

0.960.492.00

1.390.761.80

Alberta DiabetesNo diabetesRatio

1.190.602.00

1.520.931.60

1.100.542.10

1.430.881.60

1.060.551.90

1.470.871.70

Saskatchewan DiabetesNo diabetesRatio

1.120.591.90

1.560.941.70

1.160.562.00

1.580.961.70

1.160.562.10

1.700.931.80

Manitoba DiabetesNo diabetesRatio

1.300.572.30

1.480.931.60

1.170.611.90

1.810.971.90

1.180.582.00

1.590.951.70

Ontario DiabetesNo diabetesRatio

1.230.572.20

1.740.872.00

1.150.532.20

1.580.821.90

1.100.532.10

1.560.801.90

Quebec DiabetesNo diabetesRatio

1.530.662.30

2.271.162.00

1.370.642.10

2.021.111.80

1.360.612.20

2.011.041.90

Prince Edward Island DiabetesNo diabetesRatio

0.710.601.20

0.881.040.80

0.730.601.20

1.301.031.30

0.840.581.50

1.271.011.30

Nova Scotia DiabetesNo diabetesRatio

1.170.651.80

1.701.071.60

1.020.581.70

1.410.971.40

1.230.582.10

1.600.941.70

Canada DiabetesNo diabetesRatio

1.280.592.20

1.790.951.90

1.170.562.10

1.660.901.80

1.150.552.10

1.640.871.90

Table 6.Canadian Mortality* Rates by Diabetes Status, Fiscal Year, Province/Territory, and Sex

*Rate per 100,000 people aged 20+, age standardized to the 1991 Canadian population

Accomplishments,

Plans and Possibilities

The NDSS has accomplished a great deal in thefour years since the Prairie Pilot Studydemonstrated the feasibility of the concept of acoordinated, national use of administrative datafor public health surveillance. In particular, NDSShas built a firm foundation and framework tosupport its ongoing development. Much of thisearly and necessary work has involved chartingnew territory in relation to federal-provincial-Aboriginal group agreements, capacity-building,data-sharing, governance and guidelines. Someof the fruits of these efforts have been realized inthe production of the first national diabetessurveillance data. NDSS accomplishments aredetailed in Table 7 and are summarized below interms of what NDSS tells us, what it cannot tellus, and what it will tell us in the future.

What NDSS Tells Us

In a relatively short period of time, NDSS hasdemonstrated, first and foremost, that datacollected for administrative purposes can also beused to inform policy relating to a major publichealth problem in Canada. In particular, NDSScan measure prevalence, incidence andoutcomes over time for both the nation as a wholeand for specific regions. It can also comparehealth services use and other health problems ofpeople with and without diabetes.

Second, NDSS has demonstrated that, despiteregional differences, the various jurisdictionsacross Canada are able to cooperate to achievethe shared goal of reducing the burden ofdiabetes. In so doing, they have arrived at a set ofcommon standards and definitions for diabetesthat can be applied across the country.

Third, NDSS has developed a prototype ofdisease surveillance that can be applied to otherdiseases and conditions.

Fourth, the ability to examine trends (age-, sex-and region-specific) and to compare the healthexperience of people with and without diabetesmeans that NDSS data can also be used toexamine many research questions.

Fifth, the suite of databases available to NDSSpermits numerous cross-validation studies andprovides a richer dataset than could be achievedwith a single database.

Finally, NDSS demonstrates that Canadacontinues to be a world leader in the developmentof record-linkage and database methods.

What NDSS Does Not Tell Us

The NDSS has some limitations, many of whichmay eventually be overcome. The one of mostconcern is the inability to distinguish among type1, type 2 and gestational diabetes. Current workto distinguish gestational diabetes is promising.

A second limitation results from populationmobility and the consequent difficulties of recordduplication and losses to follow-up, both ofwhich contribute to data inaccuracies. A partialsolution to this problem may be periodic linkagesof the provincial/territorial databases with theNational Mortality Database for death clearance.

Third, information on risk factors for diabetes iscurrently very limited.

Accomplishments, Plans and Possibilities

32

Table 7.NDSS Accomplishments


33

Governance model� Established the necessary partnerships at federal, provincial and territorial levels� Established a governance model for a distributed system� Obtained buy-in from all provinces and territories, and some Aboriginal groups, with input also from academia and industry� Established Health Canada’s leadership role as a facilitator

Capacity-building� Implemented a capacity-assessment exercise� Devised and implemented solutions for capacity inequities among jurisdictions� Initiated capacity-building at various levels, according to jurisdictional readiness� Created technical consultant positions in all provinces and territories

Data-sharing agreements� Reviewed each jurisdiction’s legislative framework relating to participation in NDSS� Developed and implemented a series of data-sharing MOUs accommodating each jurisdiction’s privacy and confidentiality

requirements� Tested and verified a process for development of data-sharing agreements

Dedicated resources� Obtained multi-year funding for system development� Submitted detailed business plans and expenditures

Duality of interest� Developed guidelines to ensure disclosure of conflict of interest, abstinence from action where necessary, and respect for

confidentiality

Sponsorship� Developed guidelines to provide an open and transparent process, restrict influence on decisions, and allow for diversity of funding

Data validation� Adopted a standard case definition for diabetes� Determined the core set of variables to be collected� Began data validation (ongoing)� Collaborated with the CIHR to fund validation projects using NDSS

Data management� Identified data sources� Obtained agreement on the structure and organization of the databases� Developed provincial and territorial databases to permit necessary linkages� Provided technical solutions for data paring to include the necessary variables/records only and for transferring data from existing

hardware to the NDSS hardware/space� Provided standard software for transforming data to NDSS format� Produced a person-level summary file that is maintained by the provinces and territories

Data access and publications� Determined data ownership� Developed policies for data access and for NDSS database/information publication rights

Reporting and dissemination� Provided provinces with data for provincial performance indicator reporting (PIRC)� Provided aggregate data for the 2002 Diabetes in Canada report� Produced the first NDSS report on diabetes prevalence and mortality

What NDSS Will Tell Us in theNear Future

Current NDSS funding extends until the end ofMarch 2004. The original vision and goals forNDSS identified several items that requireadditional time for completion.33 Progresstowards achieving these goals is discussedbelow.

Population coverage

New Brunswick has recently provided data toNDSS, and Newfoundland and Labrador are alsoplanning to provide data for the 2004 NDSSreport. Ongoing work on the validation of adiagnostic algorithm for people under the age of20 should be completed in 2003. With thesedevelopments, the 2004 NDSS report shouldcontain data on all Canadians.

Incidence

Incidence calculations have been defined, butrequire at least five years of data to allow time forthe rates to stabilize. Incidence data will beincluded in the 2004 NDSS report.

Health services use

The databases already in use for NDSS willsupport analysis of health services use by bothpeople with and those without diabetes. Thisanalysis can include physician visits, specialistvisits and hospital use. The development ofmethods for applying costs to service use willpermit refined estimates of the economic burdenof diabetes. Days of hospital stay and number ofservices provided will be included in the 2004NDSS report.

Complications

One of the primary goals of NDSS is to developthe capacity for long-term monitoring ofdiabetes-related complications. The Prairie Pilotdeveloped a stroke module that is ready fortesting with NDSS software. The next priorityof the Validation Working Group is thedevelopment of standard definitions for diabetescomplications, and the identification andvalidation of data sources. The 2004 NDSSreport will include estimates of diabetes-relatedcardiovascular disease, cerebrovascular disease,peripheral vascular disease, retinopathy andrenal disease.

Aboriginal participation

Data for the Aboriginal population in Canada arecurrently captured by NDSS but not identified. Sofar, two Aboriginal groups (one in Quebec andone in British Columbia) are working onidentification of Aboriginal data. The 2004 NDSSreport will include data for at least one FirstNations group.

Dissemination

National-level dissemination of some NDSSsurveillance information has been achieved.Some jurisdictions (Ontario,34 Quebec35 andPrince Edward Island36) have taken initial stepstowards meeting the objective of regionaldissemination, and British Columbia, Alberta,and Nova Scotia plan to release data in 2003.Software updates are anticipated in 2003 toallow regional analyses.


34

What NDSS May Tell Us in the Long Term

NDSS was designed with flexibility in mind toaccommodate several additional surveillance“modules”. The phase of diabetes surveillancebeyond March 2004 could include one or more ofthese modules.

Risk factors

Information on determinants of diabetes,including modifiable risk factors, is required tobuild a complete surveillance picture for diabetes(see Table 8). Risk factor information is crucial tothe development of effective prevention andcontrol strategies, a fact reflected in the recentdirective from the Conference of Deputy Ministersof Health for the establishment of a surveillancesystem for chronic disease risk factors.

Health Canada’s Canadian Diabetes Strategy(CDS) prevention group has identified activitylevel, body mass index (BMI) and dietary intakeas three important risk factors on which toconduct surveillance.

Because this type of information is not availablethrough the data sources currently available toNDSS, it will have to be obtained throughsurveys, with their attendant technical (datacomparability, record linkage) and governance(access, privacy) requirements and costs.

Care indicators

The CDS care group has recommended theincorporation of indicators for care into diabetessurveillance. Hence, a list of core clinical andself-care indicators is under development.Applied expertise will be required to formulatemethods for distinguishing type 1, type 2 andgestational diabetes.

Diabetes education

Diabetes education programs are an importantresource for surveillance because of theirpotential to collect information on self-care,complications and disease progression and todirect interventions to improve diabetesmanagement. However, directed research toprovide an evidence base for specificinterventions is a prerequisite to theirincorporation into surveillance.

Other data sources

The scope for expanded diabetes surveillance isoutlined in Table 8. Integration of varied datasources expands the possibilities for analysis ofsurveillance data. For example, pre-clinicalscreening could include blood glucose data,which may be accessed from a laboratory resultsdatabase.

Application to other chronic diseases

Diabetes shares risk factors with other diseasesand is both an outcome and a determinant ofother conditions. Smoking, for example, is a riskfactor for cancer, cardiovascular disease andrespiratory disease as well as diabetes. Theseinteractions, coupled with the realities of limitedresources, make a compelling case for collabora-tion in chronic disease surveillance. The NDSSmodel is suited to other types of chronic diseasesurveillance where similar opportunities exist fortracking via client interactions with the healthcare system.


35

Table 8.The Scope for Enhanced Diabetes Surveillance†

† Roy D. Adapted from Chronic Disease Surveillance in Canada: A background paper, June 2003.(37)

*Some of the listed sources are potential and may not be available at this time.


36

Determinants Pre-clinical Clinical Outcome

DATA EXAMPLES:

genetics:prevalence of implicated genes

risk behaviour:activity levelbody massdietary intakesmoking

environment:

socio-economic:income leveleducation

DATA EXAMPLES:

screening:blood pressureblood glucose

risk reduction:healthy dietphysical activity rates

DATA EXAMPLES:

diagnosis:modes of diagnosistime to diagnosislaboratory testing

treatment and procedures:surgery

service use:hospitalizationphysician visitshome careambulatory carepalliative care

pharmaceutical:drug usecomplications and interactions

DATA EXAMPLES:

mortality:cause-specific deathssurvival rates

morbidity:complicationsdegree of disabilityquality of life

DATA SOURCES*:

surveyscensusworkplace monitoring

DATA SOURCES*:

screening databasessurveyspublic health databasesprimary care physicianselectronic health record (EHR)

DATA SOURCES*:

hospital databasesDischarge Abstract Databaseregistry dataprovincial data repositories

DATA SOURCES*:

vital statisticscoroner’s databasemultiple causes of death

Finding Answers

� Almost half of Canadian adults areoverweight. Since obesity is a risk factor fordiabetes, how will this trend affect theincidence and prevalence of diabetes inCanada in years to come?

� Cardiovascular disease is the leading causeof death in Canada. What proportion of heartdisease in Canada is associated withdiabetes?

� Canada’s population is aging. How willpopulation trends affect the number ofpeople in Canada with diabetes? What will itcost to care for them?

� To what degree have lifestyle changescontributed to the increased risk of diabetesin Aboriginal peoples relative to non-Aboriginals? After adjusting for differences inrisk factors between Aboriginals and otherCanadians, are Aboriginals more susceptibleto diabetes?

These are just a few of the many questions thatmust be answered in order to stem the rising tideof diabetes in Canada. Fortunately, with NDSS,Canada is well positioned to answer them.

A recognized world leader in record linkage anddatabase methods, Canada is applying itsconsiderable expertise to diabetes through NDSS.Since securing funding in 1999, NDSS is well onits way to meeting its four stated goals:

� a national standardized database fordiabetes with long-term monitoring fordiabetes-related complications through theintegration of new and existing databases;

� ongoing surveillance of diabetes and itscomplications in each province and territory,and in the Aboriginal population;

� dissemination of national comparativeinformation, and

� a basis for the evaluation of economic/cost-related issues regarding the care,management and treatment of diabetes inCanada.

In accomplishing its mission, NDSS is also aprototype for other types of chronic diseasesurveillance. In an expanded NDSS model, datacollected on diabetes include risk factors andcomplications. Those same data can also beanalyzed and disseminated for the preventionand control of other conditions, such ascardiovascular, cerebrovascular and renaldiseases.

Thus, the question posed at the beginning of thisreport – Can information systems designedprimarily as tools for budgeting and billing, beused to provide disease-specific information thatwill benefit all Canadians? – has been answered.And this means that answers will be found formany more questions important to Canadians.

Finding Answers

37

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References

40

Appendices

Appendix A

NDSS Capacity Assessment Form . . . . . . . . . . . . . . . . . . . . . . . . . 43

Appendix B

Regional Activity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52

Appendix C

NDSS Steering Committee Membership 2003 . . . . . . . . . . . . . . . . . . . . 56

Appendix D

NDSS Working Group Membership 2003 . . . . . . . . . . . . . . . . . . . . . . 57

Appendix E

Memorandum of Understanding (MOU) . . . . . . . . . . . . . . . . . . . . . . . 60

Appendix F

NDSS Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66

Appendix G

Comparison of NDSS and Statistics Canada Counts of Death and Population . . . . . 74

Appendix H

Annual Person-level Summary File (APLSF) Data Elements . . . . . . . . . . . . . . 76

Appendix I

Canadian Standard Population Estimates – July 1, 1991. . . . . . . . . . . . . . . 77

Appendix J

Validation Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 78

Appendix K

Age-specific Prevalence by Fiscal Year, Sex and Province/Territory . . . . . . . . . . 82

Appendix L

Age-specific Mortality by Fiscal Year, Sex and Province/Territory . . . . . . . . . . . 94

Appendices

41

Appendix A

NDSS Capacity Assessment Form

This is a summary of the capacity assessmentcompleted by the provinces and territories forNDSS funding allocations in 2000/01. Mostjurisdictions provided answers to the series ofquestions.

The capacity assessment had five components:

� description of existing infrastructure

� description of availability of data variablesincluded in NDSS data dictionary

� assessment of capacity to achieve NDSScore model activities

� outline of funding proposal 2000/01

� addendum describing funding criteria andguidance on computer hardwarerequirements

Existing Infrastructure

Data: Where are the registry, hospital andphysicians’ claims data (or comparable datasources) currently stored? Is there documentationto describe the input data? Provide a subjectiveassessment of the quality of extantdocumentation. For what time periods do reliabledata exist for the registry, physicians’ andhospital files? Who is/are the key contactperson(s) needed to facilitate technical access tothe data? Name(s), title(s), phone number(s).

Computing infrastructure: Is SAS used within theMinistry? What mechanisms exist to transfer data“out” of this environment to a common platformfor NDSS development? Tape? CD? Other?

Computer/data security: What, if any, legislationgoverns the collection and use of personal healthdata (please provide copies of statutes)?

Epidemiology and diabetes infrastructure inprovince/territory environment: Is there aprovincial “office” for diabetes? Is there aprovincial “office” for epidemiology?

Provincial/territorial health system: Is there alifelong personal identifier in use within thejurisdiction? What year was it established? Doesit cover all eligible individuals (e.g. other thanRCMP, military, federal prisoners)? Are theresubpopulations that are differentially less or morelikely to be observed by core data sources?

The databases: Are there files that operationalizethe three “core” databases described in the NDSSdata model (Jan 2, 2000)?

NDSS data environment: Is there an existing,physically secure location in which the NDSSdata might be housed?

Appendix A

43

Availability of Variables Included in NDSS Data Dictionary1

Registry File

ID Personal identifierSex M or FDate of Birth Are invalid dates allowed?Year For which data are applicable?Postal Code (in year) or other subprovincial geographic variable, such as regional health areaInsurance Start Date (in year)Insurance Start Code 1 In force on Jan 1 of year

2 Newly insured from Jan 1of year3 Other

Insurance End Date (in year)Insurance End Code 1 In force on Dec 31 of year

2 Death3 Migration4 Other

Medical Claims File

IDService DateProcedure Code (please specify codes if available)

Amputations, new hemodialysis, cataract surgery, new peritoneal dialysis, ongoing peritonealdialysis, ongoing hemodialysis, lower-limb amputations, cardiovascular surgery (CABG, angio),laser photocoagulation, vascular reconstruction procedures (PTCA)

Diagnosis ICD-9 3-digitFee PaidPhysician ID*Physician Speciality* (List specialties supported)Location of Service* 1 Inpatient

2 Outpatient

Appendix A

44

1 Variables with asterisks will be used in the initial release of the NDSS software, but if this variable is not available in a province orterritory, the associated loss of functionality does affect the core goals and measures of NDSS.

Hospital Discharge File

IDDate of AdmissionDate of DischargeAdmission Type* . . . . . e.g. urgent, elective, etc.Discharge Type* . . . . . Death, transfer, to communityDiagnosis 1 . . . . . . . ICD-9 5-digitDiagnosis 2Diagnosis 3Procedure 1Procedure 2Procedure 3Transfer in?*Transfer out?*Resource Intensity Weight*Case Mix Group*

Capacity to Achieve NDSS Core Model in 2000-01

Feasibility of core activities (1 = no anticipated problems - planned implementation, 2 = some problems anticipated,but implementation still likely, 3 = major problems anticipated, implementation uncertain, 4 = not proposed)

Activity Description Suggested Skill Set

A. Core Model Activities

InputsIdentify data source for physician claims, hospital and coverage files. Ideally,select a “run” of 5-7 years for which there are continuously available data,and a single data dictionary.

SAS/systems analysis

Process(A1.1) Transfer data from existing hardware to NDSS hardware/disk space.

(A1.2) Reduce data from (A1.1) to include only necessary variables andnecessary records.

(A1.3) Concurrent with (A1.2) or subsequent to (A1.2) transform data from(A1.2) to NDSS common input data dictionary.

(A1.4) Read data from (A1.3) into SAS files.

(A1.5) Transform data from (A1.4) to calendar years.

(A1.6) Input data from (A1.5) into NDSS core software.

(A1.7) Produce “working” person-level summary.


Appendix A

45


A. Core Model Activities (continued)

Outputs(A1.8) Prepare aggregate data files to estimate incidence, prevalence andmortality from (7).

(A1.9) Prepare aggregate data files to estimate rates for specifiedcomplications and health services utilization patterns in subpopulation withdiabetes.

(A1.10) Prepare aggregate data files to estimate rates for specifiedcomplications and health services utilization patterns in subpopulationwithout diabetes.

Statistical analysis

(A1.11) Transfer aggregate datasets to Health Canada, as defined by FPTagreements.

(A1.12) Retain (A1.7) for diabetic populations.2

(A1.13) Retain (A1.7) for non-diabetic populations.3


(A1.14) Disseminate data products coordinated with NDSS SteeringCommittee on an annual basis.

Policy/ communication-related

Policy-relatedDocument and apply for data access.

Define reporting relationships and related matters for NDSS personnel.PolicyEpidemiological/ Policy/Administrative

Define target audiences for surveillance data. Epidemiology/ Policy/ Administrative

Appendix A

46

2 if possible; retention allows for analysis of diabetic populations for longitudinal analysis.

3 if possible; retention allows for analysis of non-diabetic populations for longitudinal analysis.


B. Expanded Model Activities

InputsIntegrate records for years not incorporated into Activity A. SAS/systems analysis

Process(B2.1) Transfer data from existing hardware to NDSS hardware/disk space.

(B2.2) Reduce data from (B2.1) to include only necessary variables andnecessary records.

(B2.3) Concurrent with (B2.2) or subsequent to (B2.2) transform datafrom (B2.2) to NDSS common input data dictionary.

(B2.4) Read data from (B2.3) into SAS files.

(B2.5) Transform data from (B2.4) to calendar years.

(B2.6) Input data from (B2.5) into NDSS core software.

(B2.7) Produce “working” person-level summary.


Outputs(B2.8) Prepare aggregate data files to estimate incidence, prevalenceand mortality from (B2.7)

(B2.9) Prepare aggregate data files to estimate rates for specifiedcomplications and health services utilization patterns in subpopulationwith diabetes.

(B2.10) Prepare aggregate data files to estimate rates for specifiedcomplications and health services utilization patterns in subpopulationwithout diabetes.

Statistical analysis

(B2.11) Transfer aggregate datasets to Health Canada, as defined by FPTagreements.

(B2.12) Retain (B2.7) for diabetic populations.4

(B2.13) Retain (B2.7) for non-diabetic populations.5


(B2.14) Disseminate data products coordinated with NDSS SteeringCommittee on an annual basis.

Policy/communication-related

C. Alternative Model Activities

Description of alternative activities (where the NDSS Core Model is notfeasible) (2-3 pages)

Appendix A

47

4 if possible; retention allows for analysis of diabetic populations for longitudinal analysis.

5 if possible; retention allows for analysis of non-diabetic populations longitudinal analysis.

Funding Proposal 2000/01 Based onCapacity Assessment

Rationale

�Describe obstacles to carrying out NDSScore activities in your province/territory in2000-01.

� Attach previous three sections of capacityassessment.

Main goals for 2000-2001

� Summary of main activities and milestones.

Data/information products

� Items achievable before the end of the initialfunding period 2000-2001: incidence,prevalence, mortality (with and withoutdiabetes), complications (with and withoutdiabetes; specify conditions), health servicesutilization (with and without diabetes;specify measures).

Work plan

� For each activity listed within ActivityModules A, B, and/or C, indicate schedulewith approximate time frame.

Human resource requirements

� For each activity listed within ActivityModules A, B, and/or C, list staff members,anticipated full-time equivalent (FTE)allocation, skill set and annual FTE salary,assuming 20% benefits. Summarize thenumber of people (the number of total FTEsis expected to range between 0.5 and 2 butmay be distributed across the hiring of morethan 2 people at less than full-time hours),skill set, pay rate ($ per year plus %benefits), employment period (e.g. numberof months), number of FTEs, cost (salaryplus benefits).

Computer hardware

�Number of items and cost (attach quote) foreach of the following: servers, hard diskspace for existing devices, workstations,other

(see Addendum for guidelines)

Appendix A

48

Addendum

Funding Criteria

Objective: To build capacity in each province andterritory for the standardized surveillance ofdiabetes and its complications and for theproduction of nationally comparative data,primarily through the use of administrativedatabases where possible.

Initial funding period

April 1, 2000, to March 30, 2001

Criteria for funding allocations

NDSS funding will be allocated only to activitiesthat are directly related to the development ofsurveillance of diabetes and its complications,including policy-related activities.

A. Core Model Activities: Achievement of corefunctionality on an ongoing basis in allprovinces and territories is the priority forfederal funding in fiscal year (FY)2000/2001. It is recognized that achievingthis functionality involves bothdata-oriented tasks (such as assemblingand manipulating data) and policy-relatedtasks (such as the development ofsurveillance policies, reporting structures).6It is the responsibility of the province orterritory to prioritize data-oriented versuspolicy-related activities.

B. Expanded Model Activities: Where federaldollars are available and where ongoingfunctionality is established in a province orterritory, the integration of records for yearsnot incorporated into Activity A should beundertaken, if feasible.

C. Alternative Model Activities: Alternatives tothe core model, where core functionality isnot feasible in a province or territory, will beassessed and funded by the SteeringCommittee to the extent to which suchalternatives allow the production ofnationally comparative data.

If a province/territory has not yet fully completedActivity A but wishes to proceed to Activity B, itshould provide a rationale to the SteeringCommittee as part of the proposal, explainingwhy the completion of a particular model is notfeasible, needs to be postponed, or should becompleted concurrently with some other stage.

Enhancements to the core model will not formpart of this proposal, but proposals forenhancements can be submitted at this time andwill be forwarded to the appropriate NDSSworking group(s) for consideration.

Appendix A

49

6 It is expected that the core model may evolve and be redefined by the NDSS Steering Committee over time (in subsequentfunding periods) as provincial/territorial capacities improve.

Suggested parameters for funding allocations

Each province and territory should receive a baselevel of funding to maintain the ongoing capacitynecessary to generate nationally comparativedata. The suggested base level of funding is for aminimum of 0.5 FTEs per province or territory,and for hardware requirements commensuratewith the information processing task in eachprovince or territory.7

The total number of FTEs per province/territory isexpected to be capped at 2 FTE’s. Anyrecommendation over and above that amountwill require substantial justification and will bedependent on allocations from the SteeringCommittee and funding availability.

The estimated pay rate per year for personnelwith the relevant skill sets is approximately$50,000 per year plus 20% benefits, as per theNDSS Business Plan.

Submission guidelines

Each province and territory may submit aproposal for NDSS funding for the initial NDSSfunding period. Proposals should employ thetemplate provided at the Winnipeg workshop.

Deadlines

Proposals are due on January 28th, 2000.Applications should be forwarded electronicallyto Rob James (NDSS Technical Director) andSheila Chapman, Health Canada.

Funding decisions

Applications will be reviewed by the Secretariat inearly February 2000, with final allocationdecisions determined by the Steering Committeein early March 2000.

Special Projects (optional): ProposedEnhancements to the Core Model

Outline the proposed enhancement(s), indicatinghow it (they) will complement core NDSSactivities in the province/territory and whetherthere is an opportunity for a multi-jurisdictionalcollaboration now or in the future.

Note: These special projects will be circulated tothe appropriate subcommittee/technical workinggroup and considered separately from the fundingstream for implementation of core NDSSfunctionality. An appropriate subcommittee/working group will request further details. DoNOT expect funding for special projects to beavailable on April 1, 2000/01.

Provide brief description of the project (includeactivities, methodology, outputs).

Provide resource request (specify how theseresources will be used).

Appendix A

50

7 Thus, provinces with larger populations are likely to legitimately require more computing hardware to store and manipulate theirdata files.

Guidance on Computer HardwareRequirements

Principles

� establish a “floor”, which is provided to all

� need clear growth pathway for all hardware

�will fund hardware differentially based onpopulation size

� address questions about moving from testsite in 2000/01 to operational site in sub-sequent years

�must fit within existing computer procure-ment rules (if any) in P/T

Operating systems

� should run SAS version 8 eventually

� strongly prefer (not ranked): NT (SP 6;Windows 2000; UNIX)

� should support multi-processor hardware

� need ability to have multiple disk drives actas if one directory/drive

Base model (not required, but stronglyrecommended)

� INTEL BX chipset motherboard, i.e. 100Mhz FSB

� Pentium III CPU (supports 100 MHFSB)

� 100 Mhz RAM (PC-100) in 128 MB DIMMs

�RAM upgradable to 1 GIG (except for basesystems)

�Wide-SCSI hard drives

Security and communication

� Can data reside on work-station?

�Does data have to reside in secure room?

�What speed network do you maintain?

Upgrading and performance

Tentative benchmark for performance:

� should be able to re-assemble AnnualPerson-level Summary Files (APLSF) for 10years over one weekend, without attention

� should be able to obtain simple estimatesfrom 1 APLSF within 1 hour, e.g.prevalence, mortality

If proposed capacity does not performreasonably, P/T can apply back to NDSS SteeringCommittee to move up.

Maintenance, backups, etc.

� get 3-year maintenance contract

� define a strategy for backing up data

Appendix A

51

Appendix B

Regional Activity

Most provinces/territories have built upon thesurveillance capacity demonstrated by NDSS.The relation between diabetes and other chronicdiseases has stimulated interest in chronicdisease surveillance in general.

Yukon

� provided 1995/96 to 1999/00 data toHealth Canada;

� investigating possible expansions of the coreNDSS model to include other databases,such as the Diabetes Education Centre andthe Seniors’ Pharmacare Program;

� has partnership with the Chronic DiseaseProgram, expansion of the NDSS model toinclude other co-morbidities, and increasedcapacity in epidemiology.

Northwest Territories


� discussions with NWT Dene Nationconcerning Aboriginal data;

� developing a Northwest Territories diabetesregistry in consultation with the threeDiabetes Education Programs inYellowknife, Inuvik and Hay River and withother stakeholders;

� developing a Northwest Territories diabetesstrategy.

Nunavut

� became a territory in 1999;

� completed data cleaning of health numbersintroduced in 1999 confounded with the oldNorthwest Territories health number;

� completed a retrospective Nunavutpopulation starting in 1995/96, using bothNunavut and Northwest Territories healthnumbers;

� implemented NDSS software on 1995/96 to1999/00 data;

� preliminary review necessitated expansion ofthe NDSS model to incorporate communityhealth nurse data, since these nursesprovide primary care for approximately 60%of the population;

� completed data entry and formatting to thepre-1999 community health nurse data, andthe paper records for 2000 and 2001;

� implementing expanded NDSS software.

British Columbia


�working with First Nations’ Chiefs HealthCommittee to identify Status Indianpopulation;

� provincial diabetes surveillance reportexpected later in 2003 that includes regionalmeasures (incidence, prevalence, mortality)for 16 health service delivery areas,

Appendix B

52

Pharmacare utilization, cost analysis, andprevalence projections;

� investigating possible expansions of the coreNDSS model to include other databases,such as Vital Statistics (deaths), Pharmanet(insulin and oral hypoglycemic use forpopulation), and the provincial renal agency;

� partnership with Chronic DiseaseManagement to provide chronic disease caremeasures for surveillance, and expansion ofthe NDSS model to include other chronicdiseases such as hypertension, ischemicheart disease, congestive heart failure, renaldisease, retinopathy, depression andasthma.

Alberta

� one of the original partners in the PrairiePilot;


� provincial diabetes surveillance reportexpected later in 2003 that includes regionalmeasures (prevalence, mortality) for ninehealth regions;

� possible expansion of the core NDSS modelto include other databases, such as VitalStatistics (deaths) and CCHS;

� partnership with patient health managementactivities and expansion of the NDSS modelto include other chronic diseases, such asheart disease, renal disease and retinopathy.

Saskatchewan



�NDSS has also been used for ongoingdiabetes program planning and evaluation atprovincial and regional levels. NDSS will beincorporated into program planning andevaluation in primary care services;

�work under way to produce costs and burdenof illness estimates for major causes ofmorbidity and mortality, expected later in2003.

Manitoba



� the NDSS model as initially developed inManitoba was used to produce 11 regionaldiabetes profiles, including incidence,prevalence and major complications, as wellas data to support the provincial diabetesstrategy,8 diabetes projections,9 and a Métishealth report;10

� provincial First Nations diabetes profileexpected later in 2003 will be available at:www.gov.mb.ca/health/publichealth/diabetes/index.html

Appendix B

53

8 Diabetes: a Manitoba strategy. 1998. Available at: www.gov.mb.ca/health/documents

9 Epidemiologic projections of diabetes and its complications: “Forecasting the coming storm”. 1999. Available at:www.gov.mb.ca/health/documents

10 The health of Manitoba’s Métis population and their utilization of medical services: a pilot study. May 2002. Available at:www.gov.mb.ca/health/documents

� collaboration with medical experts in theareas of dialysis, peripheral arterial diseaseand eye disease resulted in case definitionsfor these complications.

Ontario


� a modified NDSS model was used by theInstitute for Clinical Evaluative Sciences (ICES)to publish regional diabetes profiles;11

�NDSS has contributed toward increasing theprofile of diabetes in Ontario, includingdiabetes research at ICES.

Quebec


�working with the Cree Board of Health andSocial Services of James Bay on a diabetessurveillance project;

� the NDSS model was used in October 2002to produce diabetes prevalence data byhealth region;12

�NDSS has served as a catalyst for otherdiabetes research;

� expanding model to include vital statisticsand drug data from the Régie de l’assurancemaladie du Québec.

New Brunswick

� provided 1995/96 to 1999/00 data toHealth Canada in May 2003;

� physician data did not include diagnosticcodes used by other provinces. This requiredpre- liminary work to develop algorithms tosearch a text field for key words in Englishand French.

Prince Edward Island


�NDSS methodology was used to describediabetes prevalence by health region withinPrince Edward Island13;

� investigating possible expansion of the coreNDSS model to include other databases,such as laboratory testing, diabetes programand CCHS;

� use of the NDSS model to evaluate PrinceEdward Island’s Strategy for Healthy Living,a collaborative effort to address common riskfactors for chronic disease.

Appendix B

54

11 Diabetes in Ontario: an ICES practice atlas. 2003. Available at URL: www.ICES.on.ca

12 Institut national de santé publique. Prévalence du diabète au Québec et dans ses régions : premières estimations d’après lesfichiers administratifs. Octobre 2002. Brochure available on the INSPQ website: www.inspq.qc.ca

13 Van Til L. Prince Edward Island Health indicators, provincial and regional. Charlottetown: Document Publishing Centre, January2003. Available at: www.gov.pe.ca

Nova Scotia


� provincial diabetes surveillance reportexpected later in 2003 that includes regionalmeasures (prevalence, mortality) for ninedistrict health authorities as well as healthcare utilization (hospitalization rate, lengthof stay, and burden of disease). Thesereports will be posted on the web withsecure access;

� investigating possible expansion of the coreNDSS model to include other databases,such as the Diabetes Care Program andReproductive Care Program;

�NDSS has served as a catalyst for otherresearch activities such as the newly formedMaternal/Infant/ Diabetes Research Group,and validation of diabetes in people underthe age of 20.

Newfoundland and Labrador

� data not yet provided to Health Canada;

� partnership with the Department of Healthand Community Services and theNewfoundland and Labrador Centre forHealth Information;

�NDSS software currently being implementedusing data from 1995/96 to 1999/00;

� quality of registry information and thepotential use of census data are beingevaluated.

Appendix B

55

Appendix C

NDSS Steering Committee Membership 2003

Chair: Linda Van Til, Prince Edward Island Department of Health and Social ServicesAboriginal Groups

Aboriginal Diabetes Working GroupCongress of Aboriginal PeoplesHealth Secretariat - Assembly of First NationsInuit Tapiriit KanatamiMétis National CouncilNational Aboriginal Diabetes Association

Rhea JosephJudy Chapman-PriceAnita StevensOnalee RandellDon FiddlerCatherine Cook

Academics/Clinicians

McMaster University Hertzel Gerstein

Federal Government

Health Canada - First Nations and Inuit Health BranchHealth Canada - Population and Public Health BranchStatistics Canada

Adam ProbertClarence Clottey, Yang MaoGary Catlin

Non-Government Organizations

Canadian Diabetes AssociationCanadian Institute for Health InformationCanadian Institutes of Health Research - Institute of Nutrition, Metabolism & Diabetes

Donna LillieIndra PulcinsDiane T. Finegood

Provinces/Territories

YukonNorthwest TerritoriesNunavutBritish ColumbiaAlbertaSaskatchewanManitobaOntarioQuebecNew BrunswickPrince Edward IslandNova ScotiaNewfoundland and Labrador

Joy KajiwaraJohn MorseSylvia HealeyKim ReimerLarry SvensonWilliam OseiKelly McQuillenJoan CanavanDanielle St-LaurentChristofer BalramLinda Van TilPeggy DunbarFaith Stratton

Sponsor (observer status)

GlaxoSmithKline Raymond Fox

Past Chairs include Wilson Rodger and Bernard Zinman.

Note: The report editor for the 2003 NDSS Report was Shirley Huchcroft.

Appendix C

56

Appendix D

57

Validation Working Group

Chair: Valérie Émond, Institut national de santé publique du QuébecMunaza Chaudhry, British Columbia Ministry of Health PlanningJane Griffith, Manitoba HealthJan Hux, Ontario - Institute for Clinical Evaluative SciencesWilliam Osei, Saskatchewan HealthKim Reimer, British Columbia Ministry of Health PlanningMark Smith, Nova Scotia - Population Health Research Unit, Dalhousie UniversityLarry Svenson, Alberta Health and WellnessLinda Van Til, Prince Edward Island Department of Health and Social ServicesGlenn Robbins, Health CanadaRebecca Stuart, Health Canada

Past Chairs: Jamie Blanchard, Larry Svenson

Scientific Working Group

Co-chairs: Diane T. Finegood, Canadian Institutes of Health Research, INMDLarry Svenson, Alberta Health and Wellness

Gary Catlin, Statistics CanadaHertzel Gerstein, McMaster UniversityJan Hux, Ontario - Institute for Clinical Evaluative SciencesJeffrey A. Johnson, University of AlbertaWilliam Osei, Saskatchewan HealthIndra Pulcins, Canadian Institute for Health InformationDaniel Tessier, Université de SherbrookeEllen L. Toth, University of AlbertaLinda Van Til, Prince Edward Island Department of Health and Social ServicesJean-François Yale, Université de McGillChris Robinson, Health Canada

Technical Working Group

Chair: Glenn Robbins, Health CanadaMunaza Chaudhry, British Columbia Ministry of Health PlanningValérie Émond, Institut national de santé publique du QuébecJane Griffith, Manitoba HealthJan Hux, Ontario - Institute for Clinical Evaluative SciencesRob Ranger, Nova Scotia - Population Health Research UnitDeanna Rothwell, Ontario - Institute for Clinical Evaluative SciencesMark Smith, Nova Scotia - Population Health Research Unit

Appendix D

58

Larry Svenson, Alberta Health and WellnessLinda Van Til, Prince Edward Island Department of Health and Social ServicesAsako Gomi, Health CanadaChris Waters, Health Canada

Past Chair: Rob James

Technical Consultants

Chair: Glenn Robbins, Health CanadaSherri Wright, Yukon Department Health and Social ServicesJoyce Bourne, Northwest Territories Department Health and Social ServicesManon Asselin/Sylvia Healey, Nunavut Department Health and Social ServicesMunaza Chaudhry, British Columbia Ministry of Health PlanningKen Morrison, Alberta Health and WellnessJanice Hawkey, Saskatchewan HealthAndré Wajda, Manitoba HealthAlexander Kopp, Ontario -Institute for Clinical Evaluative SciencesValérie Émond, Institut national de santé publique du QuébecHeather MacLennan-Cormier/Jason Liu, New Brunswick Department of Health and WellnessConnie Cheverie, Prince Edward Island Department of Health and Social ServicesRob Ranger/Jill Casey, Nova Scotia - Population Health Research UnitKayla Gates/Don MacDonald, Newfoundland & Labrador Centre for Health InformationRhea Joseph, Aboriginal Diabetes Working Group

Appendix D

59

Appendix E

Memorandum of Understanding (MOU)

Between:

HER MAJESTY THE QUEEN in right of Canada, as represented by the Minister of Health (hereinafter referredto as “Health Canada”)

And:

HER MAJESTY THE QUEEN in right of the Province/Territory of _____________________________, asrepresented by the Minister of Health (hereinafter referred to as “X”)

1. General

1.1 Purpose of the Memorandum of Understanding

The purpose of this Memorandum of Understanding (MOU) is to confirm the participation andresponsibilities of parties in the National Diabetes Surveillance System (hereinafter referred to as the“NDSS”), regarding the development of provincial, territorial and federal capacity for standardizeddiabetes surveillance using primarily administrative data.

1.2 Objectives of the Memorandum of Understanding

The main objectives of the MOU are to:

1.2.1 provide for the establishment of personnel support for the NDSS in “X” to carry out approvedNDSS activities and to assist “X” in analyzing its own data.

1.2.2 obtain agreement in principle for the transfer of aggregate NDSS-related data from “X” to HealthCanada, subject to a written amendment to this MOU.

1.2.3 set out the terms and conditions for NDSS-related activities and financial administration of thisMOU.

1.3 Term of the Memorandum of Understanding

Subject to termination of this MOU, the term of this MOU shall be for a four-year period to commenceon April 1, 2000, (the “Effective Date”) and end on March 31, 2004, or such other date agreed uponin writing by the parties.

Appendix E

60

2. Context

Multi-Stakeholder Response to Lack of Diabetes Data

Diabetes has been recognized in recent years as a serious public health problem in this country.Diabetes prevention programs require a well-planned, organized and viable surveillance system.However, there is limited surveillance capacity for diabetes at all levels of public health in Canada,and to address this problem government and non-government sectors have collaborated on thedevelopment of the NDSS and participate on the NDSS Steering Committee to set policy and to directactivities.

The NDSS Steering Committee has representation from every province and territory, thenon-governmental sector, Aboriginal groups, academia, Health Canada, Canadian Institute for HealthInformation, and Statistics Canada. This Steering Committee is the main decision-making body of theNDSS and acts as the data gate-keeper. The Steering Committee meets twice yearly. To assist theSteering Committee, a multi-sectoral Secretariat provides ongoing management of the NDSS. Inaddition, two subcommittees and three expert technical working groups are responsible foraddressing key issues that have been identified by the NDSS Steering Committee.

Any private sector sponsors of the NDSS may have observer status on the Steering Committee but donot have voting rights.

Funding for the NDSS

Health Canada funding for the NDSS is through the Canadian Diabetes Strategy (CDS) over a five-yearperiod commencing in fiscal year 1999/2000, as approved by Federal Cabinet in November 1999and Treasury Board in February 2000.

NDSS: Development of Core Functionality in 2000/01

The main goals of the NDSS include the development and support in every province and territory andat the federal level of a core level of functionality with regard to standardized surveillance of diabetes.Another key goal of the NDSS, although outside the scope of this MOU, is the development andsupport for diabetes surveillance in the Aboriginal community.

The NDSS core data model relies on the utilization and record linkage of provincial and territorialhealth administrative data, beginning in the start-up year with linkage of health insurance coverage,physician claims, and hospitalization data sources to allow monitoring of diabetes incidence andprevalence, rates of diabetes complications, and levels of health care utilization in the population withdiabetes compared with the population without diabetes. In the core NDSS model, person level dataremain within provinces and territories, and only aggregate data on population groups will be sent toHealth Canada for a national picture of the diabetes burden.

Provincial and Territorial Capacity and Needs Assessments

In order to determine appropriate NDSS funding levels for fiscal year 2000/01, each province andterritory completed an assessment of its capacity to accomplish core NDSS functionality within thattime period. In some cases, a province or territory indicated that the core model was not possible in itsjurisdiction in fiscal year 2000/01 and proposed “alternative” activities that would move them towardcore functionality in subsequent years.

Appendix E

61

Provinces and territories also indicated in their submissions their personnel and technical resourceneeds in fiscal year 2000/01 to accomplish NDSS-related activities. These resource requests wereassessed and in some cases revised by the NDSS Secretariat, and allocations were approved by theNDSS Steering Committee in March 2000.

This MOU pertains to approved funding allocations for NDSS personnel resources in “X”. Approvedallocations for technical resources to each province and territory will be handled through a non-federalfinancing mechanism and source.

The understanding is that NDSS core surveillance activities conducted in fiscal year 2000/01 in aprovince or territory will be carried out on an annual basis and will form the main component of theongoing functioning of the NDSS. In the case of provinces or territories that will be engaging inalternative activities in fiscal year 2000/01 because of particular challenges in those jurisdictions, theunderstanding is that they will be moving toward implementation of core NDSS functionality insubsequent years.

4. Responsibilities of Parties

4.1 Health Canada agrees to pay to “X” on an annual basis an amount not to exceed the amount asindicated in Appendix A, subject to annual review and adjustment by the NDSS Steering Committee.

4.2 The payment is to be used to reimburse the cost of hiring or otherwise engaging personnel toaccomplish NDSS-approved activities. Nothing in this agreement should be construed as establishingan employer/ employee relationship between Health Canada and any personnel hired pursuant to thisagreement.

4.3 “X” is responsible for submitting resource allocation information for each subsequent year to theNDSS Steering Committee on or before December 31 of the current fiscal year. The NDSS SteeringCommittee will review and approve or adjust the resource allocation on or before January 31 of eachyear.

4.4 “X” agrees to provide in kind resources to the NDSS as needed. These resources are expected toinclude, but may not be limited to, the provision of data for NDSS activities, monitoring ofNDSS-related personnel in “X”, infrastructure support of NDSS-related personnel, and participation onNDSS committees and working groups as appropriate.

4.5 Health Canada agrees to provide in kind resources as needed to nationally coordinate NDSSactivities, to include (but may not be limited to) monitoring of national NDSS-related staff,infrastructure support of national NDSS-related personnel, and participation on NDSS committeesand working groups as appropriate.

5. Activities of Parties

5.1 “X” will engage in NDSS-approved activities as set out in Appendix B, subject to writtenamendments agreed to by both parties and the NDSS Steering Committee.

5.2 Health Canada will provide a national coordination function for the NDSS, including administeringNDSS funding from federal sources on behalf of the NDSS Steering Committee.

5.3 Subject to a Provincial Privacy Impact Assessment being conducted where required and to thesuccessful completion of activities set out in item 5.1 where these involve “core” NDSS activities,

Appendix E

62

5.3.1 “X” agrees in principle to transfer aggregate (non-person-level, de-identified) data to HealthCanada, pending a written agreement between the parties specifying terms and conditions if requiredor under the auspices of related “X” policy and regulations, and

5.3.2 both parties agree that the proposed information to be transferred will not constitute personalhealth information under legislation that governs the collection, use and disclosure of personal healthinformation.

5.4 Subject to the successful completion of activities set out in item 5.1, both parties agree inprinciple to coordinate the publication and dissemination of information products directly resultingfrom NDSS activities, pending oral or written agreement by both parties and the NDSS SteeringCommittee regarding the content and schedule of information publication and dissemination.

6. Administration of Agreement

6.1 Both parties will formally participate on the NDSS Steering Committee, and will meet andcommunicate on an as-needed basis to collaboratively direct and monitor the activities set out in thisagreement.

7. Principles of Data Privacy, Access and Ownership

7.1 Data privacy standards as set out in all applicable provincial/territorial legislation and the federalPrivacy Act will be respected.

7.2 It is the intention of the parties to uphold the principle of public access to health information to thefullest extent expedient consistent with applicable provincial and federal legislation regarding dataprivacy and ownership.

8. Intellectual Property

8.1 Any intellectual products such as NDSS standardized statistical programs and analysis tools givento “X” to fulfill the activities set out in Appendix B are to be considered in the public domain. TheNDSS must be acknowledged in any publications arising from the use of these products.

8.2 Any innovations to the standardized NDSS intellectual products that are developed by “X” as wellas any information products developed from data for which “X” is the custodian remain the property of“X”.

9. Financial Administration

9.1 The parties accept accountability for demonstrating good management practices in financialplanning, expenditure control and reporting, according to generally accepted accounting practices.

9.2 Health Canada, on behalf of the NDSS Steering Committee, may commission audits of any or allNDSS-related financial records of “X” relating to the hiring of NDSS personnel to ensure that all NDSSfunds are expended in accordance with the terms of this MOU.

Appendix E

63

9.3 Health Canada will make payments on a quarterly basis to “X” pursuant to activities described inAppendix B. The payment will be made upon receipt of an invoice and presentation of evidence ofactivities completed and of any personnel hired or otherwise engaged for NDSS activities.

9.4 Invoices should include a forecast showing any budget adjustments required for the remainder ofthe fiscal year.

9.5 In the case of an approved adjustment to Health Canada’s annual payment to “X”, HealthCanada’s representative on the NDSS Steering Committee is responsible for informing the budget andplanning units of financial and corporate services within Health Canada in a timely fashion of theapproved adjustment in payment level.

10. Termination by Consent

The MOU may be terminated by the consent of either of the parties giving ninety (90) days’ notice inwriting to the other party.

11. Termination for Cause

11.1 If “X” fails to perform the activities set out in Appendix B to the satisfaction of the NDSS SteeringCommittee, Health Canada may terminate in whole or in part this MOU, including Health Canada’sobligation to make additional payments of NDSS funds to the other party for the remainder of theMOU.

11.2 If Health Canada fails to pay the amount at the level set out in Appendix A or at the approvedadjusted level pursuant to annual review by the NDSS Steering Committee, “X” may terminate inwhole or in part this MOU, including “X”’s obligation to perform the activities set out in Appendix B.

12. Amendments

This MOU will only be amended, in writing, by mutual consent of both parties.

13. Conflict of Interest

13.1 No member of the House of Commons shall be admitted to any share or part of this Agreementor to any benefit to arise therefrom.

13.2 It is a term of this Agreement that no former public office holder who is not in compliance withthe post-employment provisions of the Conflict of Interest and Post-Employment Code for PublicOffice Holders shall derive a direct benefit from this Agreement.

13.3 If the status of any party changes in any way that prejudices the project, such party shallpromptly inform the other parties.

Appendix E

64

14. Funding Changes

If Health Canada will be reducing or terminating the funding under the MOU because of changes orreduction in Health Canada funding for the NDSS, Health Canada shall give notice in writing to “X” asearly as possible. Health Canada will give “X” sixty (60) days’ notice in writing before reducing orterminating the funding, whether the funding change is to occur during or at the beginning of a fiscalyear. In case of such termination, Health Canada will pay “X” all outstanding amounts for activitiesperformed under this agreement.

15. Notice

Any notice or other communication required to be given or made under this MOU shall be in writingand shall be deemed to be sufficiently given if sent by registered mail, or by telegram, or by facsimile,or by delivery in person, to the other party at the following address(es).

If to Health Canada:NAME/TITLE/ORGANIZATION/ TEL/ FAX

If to “X”:NAME/TITLE/ORGANIZATION/ TEL/ FAX

AGREED to this ________ day of __________________, 2000For Health Canada:

Date _______________ _________________________________Signed on Behalf of Health Canada

Witness ________________________________

For “X”:

Date ______________ _________________________________Signed on Behalf of “X”

Witness __________________________________

Appendix E

65

Appendix F

NDSS Guidelines

Duality of Interest(Approved by NDSS Steering Committee

October 2, 2000)

The purpose of this policy is to assist the NDSSby providing duality of interest guidelines formembers of the Steering Committee.

A duality of interest may arise in two situations:(1) when a member has the opportunity toinfluence the business decisions of the SteeringCommittee in a way that could lead to personal,financial gain for the member or his/her family;and (2) when a member’s interests are contraryto the interests of the Steering Committee.

In order to avoid both the fact and theappearance of improper influence, a membershould not vote on, approve or recommendapproval of a transaction or contract with whichthe member is associated and should discloseany potential conflict prior to a vote or otheraction.

General principles regarding duties of members

�Members shall deliberate impartially on allissues placed before the SteeringCommittee.

�Members shall respect matters of aconfidential nature and shall not provideunauthorized information on these mattersto the media, the public or others.

Disclosure of duality of interest

�Disclosure of duality of interest shall be anagenda item for all meetings.

� A member shall, as soon as possible afterthe start of the meeting, disclose the natureof his/her duality of interest, and this shall berecorded in the minutes of the meeting.

Abstinence from action

�Members who are deemed to have afinancial conflict of interest position withreference to any item under discussionshould absent themselves from the meetingduring the period when such discussion istaking place.

�On the Steering Committee, only a singlerepresentative of each province, territory andorganization present shall vote on matterspertaining to contracts or transactions withthat province, territory or organization.

�On NDSS subcommittees or working groups,on which not all jurisdictions may berepresented equitably, members shallabstain from voting on contractual/transactional matters pertaining to their ownprovince, territory or organization.

Compliance

� After a member has disclosed the nature of apotential financial conflict of interest at thestart of the meeting, the existence of aconflict of interest will be determined by amajority vote of the Steering Committeemembers present, on a case-by-case basis.

� The Chairperson is responsible for ensuringthat all members comply with this policy.

Appendix F

66

� These principles shall be binding on allmembers of the Steering Committee, itssubcommittees and working groups.

Definitions

� “Steering Committee” is to be interpreted asthe National Diabetes Surveillance SystemSteering Committee.

� “Member” is to be interpreted as thedesignated representatives on the NationalDiabetes Surveillance System SteeringCommittee. A member may contributefunding to the National DiabetesSurveillance system and has votingprivileges.

Fund-Raising and Sponsorship(approved by NDSS Steering Committee

October 2, 2000)

The purpose of this policy is to assist the NDSSby providing principles for fund-raising andeligibility criteria for NDSS sponsors, and bydefining potential benefits to sponsors, includinga protocol for sponsors as observers at generalsessions of the Steering Committee.

Principles for fund-raising

� There must be an open and transparentprocess for the solicitation of funds wherebyall likely funders of the NDSS are informed ofthe opportunity to become a funder, and anybenefits accruing to the sponsors are publicknowledge and agreed to by the SteeringCommittee.

� There should be a diversity of fundingsources so that one funder does not haveundue control over the stability of NDSSfunds.

� Private funders should not interfere or bepromised influence regarding decisions andactivities of the Steering Committee.

� The Steering Committee should be informedof the willingness of a private company tobecome a sponsor of the NDSS.

�Draft funding agreements with potentialsponsors should be circulated to the SteeringCommittee for approval prior to signing.

� The Steering Committee must approve theacceptance of funding from any specifiedprivate source.

Eligibility criteria for sponsors

All prospective sponsors will be rated on thefollowing:

Interest: NDSS fits with corporate businessand/or funding priorities

Capacity: Declares the ability to contributesignificant dollars to this initiative eitherphilanthropically or otherwise

All the following criteria must be met by apotential sponsor:

� There must be a long-term financial commit-ment ( > 1 year) to the NDSS.

� It must be a substantial financialcontribution ( > $100,000 per year) to theNDSS.

� There must be no outstanding commercialmatters before an organization or theSteering Committee, which, in the opinion ofthe Steering Committee, gives theappearance of, if not the fact of, conflict ofinterest.

� The potential sponsor must accept the “noinfluence” stipulation in the affairs of theSteering Committee.

Appendix F

67

� There should be no inconsistency/incompatibility between the goals andobjectives of the NDSS and thegoals/products of the potential sponsor.

Potential benefits to sponsors

�Observer status at Steering Committeemeetings, in-camera sessions excluded

�Name acknowledgement on NDSS products

� Advance release of publicly distributedreports

Protocol for sponsors as observers at SteeringCommittee meetings

� Sponsors may attend Steering Committeemeetings as observers and may only speakby invitation of the Chair.

� Sponsors do not have voting authority atSteering Committee meetings.

� Sponsors may not attend in-camera sessionsof the Steering Committee.

� The Steering Committee should sendsponsors reports on an agreed-uponschedule regarding NDSS projectaccomplishments.

� Sponsors may be identified as such on NDSSproducts.

� As corporations wish to provide financialsupport to the NDSS, their relation with theSteering Committee as observers at SteeringCommittee meetings will be reviewed on acase-by-case basis.

Definitions

� “Steering Committee” is to be interpreted asthe NDSS Steering Committee.

� “Member” is to be interpreted as thedesignated representatives on the NDSS

Steering Committee. A member maycontribute funding to the NDSS and hasvoting privileges.

� “Sponsor” is to be interpreted as a privatefinancial contributor to the NDSS. A sponsoris not a designated member of the SteeringCommittee, does not have voting privileges,and may not attend in-camera sessions ofthe Steering Committee.

� “Confidential” is to be interpreted asmaterial that is so designated at a meeting,such as funding proposals, data results,business strategies, pricing information,financial data, research protocols andintellectual property.

� “No influence” is to be interpreted as notinterfering with or having influence overdecisions and activities of the SteeringCommittee.

Data Access and Publications(approved by NDSS Steering Committee

November 27, 2002)

The purpose of this policy is to promote thecredibility, usefulness and accountability of theNDSS by defining principles around which dataand products may be accessed from NDSS, howdata or products may be obtained, and thepublication thereof. This policy outlines theprocedures believed necessary to processresearch requests efficiently while ensuring bothconsideration of the public interest and fullcompliance with legislation.

This policy covers data that have been collected,linked and/or analyzed with the assistance ofNDSS resources. The audiences anticipated asusers of NDSS data are (although this does notpreclude others from requesting access, ifwarranted) as follows:

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68

� parties engaged in predetermined NDSSprojects, outcomes or activities;

� parties engaged in independent research;

� other audiences such as media, othergovernment organizations, anddiabetes-related stakeholders, includingnon-governmental organizations and healthcare professionals, and the general public.

Nature of data and products that can beaccessed:

� unpublished NDSS aggregate data kept byHealth Canada;

� person-level data kept at provincial andterritorial sites (data from one specific sitemay be requested directly from thejurisdiction responsible for the data; thispolicy aims at coordinating multi-siterequests); and

�NDSS programming codes.

Guiding principles

� Provinces and territories must be inagreement with any and all uses (includingcollection, linkage, analysis, access, andpublication) of their respective provincialand territorial data within NDSS.

� This policy must comply with provincial,territorial and federal legislation and policiesregarding data access and protection ofprivacy, and comply with existingMemoranda of Understanding. Access toand dissemination of data fromprovincial/territorial NDSS data files mustcomply with provincial/territorial legislationand policy, and access to and dissemina-tion of Health Canada NDSS data files mustcomply with federal legislation and policy.

� Terms defining access to the NDSS datarelating to Aboriginal peoples on a nationallevel will be determined by the AboriginalDiabetes Working Group.

� In accordance with the Memorandum ofUnderstanding, any use of data that identifyspecific Aboriginal groups must have priorapproval of the signatories to theMemorandum of Understanding. Specialinstances outside the MOU will beconsidered on a case-by-case basis.

� Person-level data will remain within thecustody of the provincial/territorial NDSSdatafile.

� All parties recognize that nothing hereininterferes with provincial and territoriallegislated obligations to manage publichealth reporting in each jurisdiction orHealth Canada obligations as they relate toFirst Nations.

�NDSS statistics must be based oncomparable data derived from differentprovincial/ territorial data sets, must reflectconsistent approaches to data collection andmust lead to valid and reliableinterpretations. Should data not becompletely comparable, provinces andterritories will be requested to providetechnical notes, which will be forwardedwith any data requests and noted inpublications. The Technical Working Groupwill determine whether or not the data arecomparable.

Uses of NDSS data and products accessed

Data are provided for the exclusive purpose asstated in a proposal and may not be used for anyother purpose without the explicit writtenapproval, in advance, of the NDSS Data Accessand Publications Subcommittee. Authorized

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69

users are prohibited from using NDSS data orproducts in the pursuit of any commercial orincome-generating venture. Any breach of theagreed upon terms may affect subsequent accessto data maintained by the NDSS. Also, other legalremedies are not precluded by any such action.The NDSS data and products thereof (e.g.computer software, analytical tools) remain in thepublic domain. Sharing of data with third partiesis prohibited without specific permission.

Ethical review for access

NDSS data should be used for scientificallysound, high-quality analyses, to supportacademic, policy, health economic or businessresearch. Proposals for research using NDSSdata must demonstrate acceptable rationale,analytical methods, and security/confidentialitysafeguards. All NDSS investigator-initiatedprojects requesting unpublished data mustreceive ethical approval from an ethics board thatcomplies with the “Tri-Council Policy Statement:Ethical Conduct for Research Involving Humans”before data are released.

Requirements to request access

� Proposals to access NDSS data held at aprovincial or territorial site will be submittedfor review to the relevant provincial orterritorial body with custody of the data.Where applicable, proposals to accessAboriginal data for a specific province orterritory will be submitted for review to theAboriginal partner as identified in the MOU.Provincial and/or territorial approval isrequired before data will be released, andsign off will occur within the jurisdiction.Aboriginal partner approval is requiredaccording to the conditions agreed by allparties.

� Proposals to access NDSS aggregate dataheld by Health Canada will be submitted for

review to Health Canada. Third party accesswill be reviewed on a case-by-case basis.The NDSS will be permitted to carry outon-site visits and other inspections to ensurecompliance with the conditions of access.All requests will be logged at Health Canada.

�Requests to access NDSS programmingcode will be logged at Health Canada toensure that sharing parties have the mostcurrent version of the code. The NDSSprogramming code is in the public domainand may be shared with requesting partieswith appropriate access to the technologyused.

All requests for data must be submitted in writingto the secretary of the Data Access andPublication Subcommittee and include thefollowing:

� the party requesting the data;

� the purpose of the project;

� the benefits of the project;

� the list of data being requested;

� the analysis to be performed;

� the nature and intent of any data linkages;

� any publications expected to result fromdata analysis and where and when they willbe distributed;

� the means by which the client will ensurethe security of the data;

� a description of how and when the data willbe disposed of or returned;

� the names and titles of all individuals whowill have access to the data;

� the complete document package submittedfor ethical review;

� the results of any ethical committee reviewof the project; and

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70

� the source(s) of funding for the request andproposed analysis.

When a prospective user approaches the NDSS torequest access to data, the NDSS should forwardto the researchers a package containing aresearch application. Requests are to beaccompanied by a signed Non-DisclosureAgreement stating that the researcher agrees tocomply with NDSS policies respecting use anddisclosure of the data:

� to use the data only for the stated purpose;

� to make no attempt to link or otherwiseidentify a data subject other than asdivulged;

� to maintain the data’s electronic and/orphysical security and dispose of the data asspecified;

� to not disclose the data to others;

� to provide two advance copies of anypublication or report to the NDSS SteeringCommittee for review and comments. Thecopies will be kept confidential. This isintended to ensure that data are beinginterpreted accurately;

� to acknowledge NDSS as the data source inany publication or report and to state thatthe interpretation and conclusions containedin the publications or report do notnecessarily represent those of the NDSS,Health Canada, or any province or territory;

� to provide a copy of the final publication orreport to the NDSS.

All requests will be received and reviewed by thearea responsible for the data (i.e. Health Canada,province/territory) in accordance with the NDSSprinciples, policies and procedures for datadisclosure. The secretary of the Data Access andPublication Subcommittee (also an employee of

Health Canada) will be co-ordinating the processand collecting the necessary authorizations fromeach jurisdiction.

Decisions regarding NDSS unpublishedaggregate data will be made by the Data Accessand Publications Subcommittee and are subjectto the endorsement and approval of the NDSSSteering Committee.

Disclosure

Before release, reports containing any datarequested through the NDSS, or reportsgenerated using NDSS data, will be reviewed.The Data Access and PublicationSubcommittee’s review will ensure that privacystandards are complied with and that the correctdata are used and are not misrepresented. TheData Access and Publication Subcommittee willreceive a copy of every report before publication,at the same time as the NDSS partners or theNDSS Steering Committee, according to the ruleslisted below.

Parties engaged in independent research:

� The NDSS provides parties engaged inindependent research a right to publish,assuring the parties that once the use of thedata has been approved, no censure rightscan be applied by NDSS partners and nopublication can be suppressed because ofdifferences of interpretation or political con-sequences. However, NDSS partners,specifically those whose data contributed tothe research, may request a delay or specificprocess whereby they can review themanuscript to detect any error of fact. Theinterpretation and conclusions contained inthe publications or report may notnecessarily represent those of the NDSS,Health Canada, or any province or territory.

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71

�Before being sent to publishers, manuscriptsfrom parties engaged in independentresearch, peer-reviewed or not, should besent to the Data Access and PublicationSubcommittee, and the Subcommittee willsend the manuscripts to provinces orterritories whose data contributed to theresearch for review. NDSS partners and DataAccess and Publication Subcommitteereviewers have two weeks upon receipt tomake recommendations for changes.

� Peer-reviewed or non-peer-reviewedmanuscripts must be sent to the DataAccess and Publications Subcommitteeonce they are accepted for publication (forinformation purposes and to facilitate acoordinated approach to publication ofNDSS data only, not to prevent publication).

When NDSS data are used for presentations andconference abstracts, the Data Access andPublication Subcommittee should be notified.

Protection of privacy and confidentiality

Privacy and confidentiality must be protected.Successful applicants must comply with theNDSS Privacy and Confidentiality Policy, whichdescribes detailed measures for ensuring theprotection of privacy and confidentiality of NDSSdata. Measures to be used include, but are notlimited to, checks for residual disclosure ofindividual identity prior to release of any reportsor aggregate data, and ensuring thatapproval/release of any person-level data (forexample, for research) is in accordance with thelegislation, polices and processes of theindividual organizations at the provincial andterritorial level where the data reside. It is aprovincial and territorial role to ensure adequatesecurity arrangements for all person-level data.

Destruction

Data files may be provided for a five-year timeperiod, following which the original data set andany copies thereof must be destroyed at thecompletion of the project or according to thesigned agreement destruction date or negotiateddata expiry date.

Penalties

Those who violate conditions for disclosure orwho misrepresent the nature of the data suppliedto them will be subject to sanctions, which mayinclude

� a written complaint to the sponsoringorganization;

� rebuttal in the journal;

� refusal of future access to data for theresearcher and/or the institution he/sherepresents;

� seizure of any data released by NDSS;and/or

� legal action.

Publication

� The NDSS Steering Committee willendeavour to publish on an annual basis areport with core epidemiological measuresfrom aggregate NDSS data at the HealthCanada site.

� The NDSS Steering Committee retainsauthority to approve publication of NDSSinformation by Health Canada.

� The NDSS Steering Committee permitsHealth Canada to release a public-use NDSSaggregate data file on its website afterapproval of the content of the data file by theSteering Committee and Aboriginal DiabetesWorking Group.

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72

� The National Diabetes Surveillance Systemmust be credited as a contributor in anypublications arising from NDSS data atprovincial, territorial or Health Canada sitesor any other organization using NDSS data,and a disclaimer added that theinterpretation and conclusions contained inthe publications or report do not necessarilyrepresent those of the NDSS, HealthCanada, or any province or territory.

�Diabetes-related stakeholders not alreadyrepresented on the NDSS SteeringCommittee will be first in line for obtainingcopies of public-release annual NDSSreports, starting with the memberorganizations of the Diabetes Council ofCanada.

� The Data Access and PublicationsSubcommittee is responsible for submittingits publication plans (schedule and proposedcontent) to the Steering Committee forapproval each year. In addition, theSubcommittee will work to coordinatesimilar publications from provinces andterritories, as feasible and desired.

� Provinces and territories will continue topublish their own diabetes data at timesdictated by provincial/territorialrequirements.

Cost-recovery

� Cost-recovery fees for NDSS publicationsand for the provision of unpublished NDSSinformation or data files can be set at levelsto be determined by the governments wherethe NDSS data are kept. Health Canada willhave copies of aggregate data already held atrespective provincial/ territorial sites and willtherefore never charge a province or territoryfor a copy of its own data.

� The prospective user of data held by HealthCanada may be required to sign an“Agreement to Proceed with DataPreparation” form, which briefly outlines thesearch activity and the estimated costs, forwhich the user agrees to reimburse HealthCanada. For data at the provincial/territoriallevel, an individual province/territory mayhave its own agreement that the prospectiveuser may be required to sign.

Evaluation

� The NDSS Steering Committee will evaluatethe activities covered by this Data Accessand Publications Subcommittee as onecomponent of the overall evaluation of theNDSS. The Steering Committee will alsodetermine whether and to what extent thegeneral guiding principles of the NDSS havebeen followed; namely the principles ofconsistency, flexibility, quality, cost-effectiveness, accessibility, privacy andconfidentiality, and responsiveness.Measures to be used for this evaluation areto be determined and may includeconsistency in reporting on the samepopulation/area from different NDSS sites,flexibility in the range of themes addressedin special reports, quality of research fromNDSS aggregate data, the impact ofcost-recovery fees, rates of successfulrequests for NDSS aggregate data andinformation, absence of confidentialityleaks, and assessment of whether the NDSSis having an impact on research activity andis responding (e.g. in its special reports andenhanced analyses) to questions raised byresearch.

� The Access and Data Publication WorkingGroup should review this policy every twoyears.

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73

Appendix G

Comparison of NDSS and Statistics Canada

Counts of Death and Population

Death Counts

Province/Territory Death Counts* and Ratio (%) 1995/1996 1996/1997 1997/1998 1998/1999

Yukon NDSSStatistics CanadaNDSS: Statistics Canada (%)

14915496.75

145139104.32

119111107.21

13013596.30

Northwest Territories NDSSStatistics CanadaNDSS: Statistics Canada (%)

238234101.71

27829095.86

260255101.96

27928797.21

British Columbia NDSSStatistics CanadaNDSS: Statistics Canada (%)

24,97126,618

93.81

26,32927,734

94.93

26,42327,750

95.22

25,17127,665

90.98

Alberta NDSSStatistics CanadaNDSS: Statistics Canada (%)

15,78915,906

99.26

16,37116,532

99.03

16,63716,819

98.92

15,92116,817

94.67

Saskatchewan NDSSStatistics CanadaNDSS: Statistics Canada (%)

8,5818,475

101.25

8,8968,845

100.58

8,7978,789

100.09

8,8928,893

99.99

Manitoba NDSSStatistics CanadaNDSS: Statistics Canada (%)

9,5879,555

100.33

9,6869,672

100.14

9,1909,569

96.04

9,8059,834

99.71

Ontario NDSSStatistics CanadaNDSS: Statistics Canada (%)

77,44677,977

99.32

79,29779,868

99.29

78,21680,292

97.41

76,11480,027

95.11

Prince Edward Island NDSSStatistics CanadaNDSS: Statistics Canada (%)

1,1711,172

99.91

1,2951,248

103.77

1,1151,076

103.62

1,1271,125

100.18

Nova Scotia NDSSStatistics CanadaNDSS: Statistics Canada (%)

8,0407,743

103.84

7,6557,850

97.52

7,9438,124

97.77

7,4107,739

95.75

*counts of deaths due to any cause, people aged 20+

Appendix G

74

Population Counts

Province/TerritoryPopulation Counts

(Ages 20+) and Estimates 1997/1998 1998/1999 1999/2000

Yukon NDSS annual countNDSS July countStatistics Canada July estimate

24,32022,43222,549

23,84621,86722,141

23,51421,60221,896

Northwest Territories NDSS annual countNDSS July countStatistics Canada July estimate

29,59327,44926,918

29,38127,20926,579

28,83726,77826,600

British Columbia NDSS annual countNDSS July countStatistics Canada July estimate

2,947,3632,518,8932,941,849

2,970,2432,568,3202,980,366

2,996,6662,588,3343,016,521

Alberta NDSS annual countNDSS July countStatistics Canada July estimate

2,074,9522,025,4702,004,598

2,130,0582,076,7412,062,669

2,172,8362,124,2412,110,691

Saskatchewan NDSS annual countNDSS July countStatistics Canada July estimate

738,042711,309712,441

745,309718,880717,473

752,753726,971721,810

Manitoba NDSS annual countNDSS July countStatistics Canada July estimate

847,294818,002812,180

848,247818,203815,330

852,112822,341820,391

Ontario NDSS annual countNDSS July countStatistics Canada July estimate

8,778,9478,509,4638,250,541

8,937,5078,683,0608,369,816

9,130,3088,872,1658,491,836

Prince Edward Island NDSS annual countNDSS July countStatistics Canada July estimate

105,04499,66997,837

104,340100,32398,436

105,019101,09499,602

Nova Scotia NDSS annual countNDSS July countStatistics Canada July estimate

716,220692,053691,021

722,403698,270695,177

731,016707,022700,854

Appendix G

75

Appendix H

Annual Person-level Summary File

(APLSF) Data Elements

Category Description Name

Demographic

Age as of March 31 of fiscal yearCalculated using the date of birth and year ending date

Personal lifetime identifierIdentifier that is unique to that person for perpetuity

Municipality or other geographic descriptor as defined by the province or territory (optional)Province or territorySexFiscal year to which data apply

AGE

ID

MUNPTSEXYEAR

Exposure

Person-days of observation with diabetes in current yearPerson-days of observation without diabetes in current yearPerson-days of observation

Total number of days person was eligible for health insurance in the province/territory within the current year

DM_PDODM_PDONPDO

Diabetes Case Ascertainment Information

Hospital discharge date where diabetes was recorded among the first three diagnosis codesDate of first diabetes diagnosis from physician data in current fiscal yearDate of second diabetes diagnosis from physician data in current fiscal yearDate of first diabetes diagnosis from physician data in previous fiscal year

D_DH3DD_DMD1D_DMD2DM_DMD1

Case Date

Perpetual diabetes case date DM_CASE

Complication/Co-morbidity Data

(NOTE: Other co-morbid conditions will be added as the case definitions are defined.)

Date of death DOD

Health Services Use

(NOTE: Other health services measures will be added as definitions are defined)

Treatment days – number of days admitted to hospital (not included in current data) TDAYS

History

Count of medical diagnoses in current yearMulti-year count of physician diagnosis of diabetesYear first observing ID/earliest NDSS year person was observed within NDSS, withinprovince/territoryThe fiscal year in which the person was given a diagnosis of diabetes within the NDSS

D_CMDDM_CMDFIRSTYR

DM_YRCCS

Note: Health Canada can provide access to a dummy file for researchers interested in testing SAS code.

Appendix H

76

Appendix I

Canadian Standard Population

Estimates — July 1, 1991

Sex Age Group Population Population Over Age 20 Proportion Over Age 20

Both 00-0910-1920-2930-3940-4950-5455-5960-6465-6970-7475-7980-8485+Total

3,906,3913,839,2054,638,6914,943,1613,813,0441,339,9021,238,4411,190,2171,084,588

834,024622,221382,303287,877

28,120,065

4,638,6914,943,1613,813,0441,339,9021,238,4411,190,2171,084,588

834,024622,221382,303287,877

20,374,469

0.227670.242620.187150.065760.060780.058420.053230.040930.030540.018760.01413

Female 00-0910-1920-2930-3940-4950-5455-5960-6465-6970-7475-7980-8485+Total

1,910,1641,873,1252,276,2392,467,2951,897,274

670,271620,986613,550588,370469,865365,286237,631198,419

14,188,475

2,276,2392,467,2951,897,274

670,271620,986613,550588,370469,865365,286237,631198,419

10,405,186

0.111720.12110.093120.03290.030480.030110.028880.023060.017930.011660.00974

Male 00-0910-1920-2930-3940-4950-5455-5960-6465-6970-7475-7980-8485+Total

2,006,7731,976,7342,343,7752,480,5461,917,714

676,641617,879580,323497,485362,500252,779139,40885,869

13,938,426

2,343,7752,480,5461,917,714

676,641617,879580,323497,485362,500252,779139,40885,869

9,954,919

0.115030.121750.094120.033210.030330.028480.024420.017790.012410.006840.00421

Appendix I

77

Appendix J

Validation Work

Diagnostic information provided byadministrative data is limited on the basis of asingle interaction with the health care system.NDSS uses a more elaborate algorithm that isbased on multiple interactions between theperson with diabetes and physicians andhospitals. Consequently, NDSS requires anarticulated case definition and ongoing validationof that definition. NDSS validation uses asystematic approach, with different aspects ofvalidation conducted in at least twoprovinces/territories to demonstrate potentialdifferences by jurisdiction.

Gold Standards and Jurisdictions

The case definition currently used by NDSS isbased on developmental work in Manitoba thatproduced sensitivity of over 95% (specificitycould not be assessed) using the gold standard ofthe Diabetes Education Resource1. Initialvalidation work in Alberta2 and Ontario3 used theNational Population Health Survey4 as the goldstandard. Both studies concluded thatself-reported survey data could not be used as agold standard, since they underestimate the truedisease burden in the population.

Other completed validation projects havesubstantiated the use of the NDSS algorithm.Studies in Nova Scotia,5 Ontario6 and PrinceEdward Island7 produced sensitivity measuresranging from 69% in Nova Scotia to 83% and86% in Prince Edward Island and Ontariorespectively. The gold standards were acombination of the provincial health survey andthe Diabetes Care Program Registry in NovaScotia, the diabetes registry in Prince EdwardIsland, and medical charts in Ontario.

In the same three studies, specificity measuresvaried much less, at 99% in Nova Scotia andPrince Edward Island and 97% in Ontario.Positive predictive value was 80% in Ontario and78% in Prince Edward Island.

Validation work is ongoing in other jurisdictions.In British Columbia, the gold standard is thenumber of prescriptions for insulin and oralhypoglycemic medication; in the Yukon it is useof the Diabetes Education Centres, and in Quebecthe use of clinical data.

Appendix J

78

�NDSS algorithm: a person is identifiedas having diabetes with one hospital ortwo physician visits within two yearscoded with a diagnosis of diabetesmellitus.

�Sensitivity: the proportion of people whotruly have diabetes who are identified bythe NDSS algorithm.

�Specificity: the proportion of people whotruly do not have diabetes who areclassified as such by the NDSSalgorithm.

�Positive Predictive Value: theprobability that a person identified by theNDSS algorithm as having diabetes trulydoes have diabetes. This is influenced bysensitivity, specificity, and prevalence.

Validity Over Time

The Prince Edward Island study found sensitivity,specificity and predictive value to be stable forfive to seven years of data for people aged 25 andover, and for a series of sequential five-year datawindows.7 With the use of 10 or more years ofadministrative data, specificity and positivepredictive value decreased as prevalent casesover-accumulated. Alternative algorithms areunder investigation in Nova Scotia to incorporatethe concept of cumulative probability of diabetes.

Incidence Versus Prevalence

New cases and prevalent cases are difficult todifferentiate in the early years.8 Several studiesfound at least five years of data are requiredbefore stable estimates of incidence can beobtained.7,9 Therefore incidence rates are notincluded in the first NDSS report.

Special Populations

Validation has not yet been completed for peopleunder the age of 20 years. Initial investigation ofseveral algorithms for type 1 diabetes hasproduced positive predictive values of less than40%.10 Prince Edward Island and Ontario arealso investigating several algorithms for detectingdiabetes among people under age 20, using thePrince Edward Island Diabetes Registry andhospital chart abstracts respectively.

Initial work in British Columbia and Ontariosuggests that the increase in female prevalenceseen during the child-bearing years may be theresult of miscoding of gestational diabetes. Oneproject funded by the Canadian Institutes ofHealth Research (CIHR) is validation of analgorithm for removal of gestational diabetesusing chart abstracts from maternity hospitals.

This project will also provide validation forindividuals under non fee-for-servicearrangements, using electronic patient recordsand drug claims data. Validation work inAboriginal communities will include use of theSandy Lake diabetes community screeningdatabase and Northern Diabetes Health Networkdatabase.

Complications

The complications of diabetes are also underinvestigation, with an initial focus onco-morbidities of cardiovascular disease,cerebrovascular disease, peripheral vasculardisease, including lower limb amputations,retinopathy and dialysis. Projects are under wayin Ontario,11 Quebec, Manitoba, and the Yukon.One of the CIHR-funded projects will describe thedistribution of co-morbid conditions andCharlson’s co-morbidity index12 among inpatientsusing the national Hospital Morbidity Datamaintained at the Canadian Institute for HealthInformation (CIHI) and the Person-OrientedInformation Database maintained at StatisticsCanada. The effect of co-morbid conditions onhospital stay, hospital readmission, and hospitalmortality will be assessed. The distribution ofco-morbid conditions in the general Canadianpopulation will be described using the 1996/97National Population Health Survey.

Health Service Use

Work is also planned for health service use. Theneed for accurate identification of people withand without diabetes will become increasinglyimportant as NDSS looks toward themanagement of diabetes.

Appendix J

79

New Initiatives with CIHR

Recently, the NDSS and the CIHR Institute ofNutrition, Metabolism and Diabetes collaboratedin funding health services and population healthresearch on diabetes. Each partner contributed$250,000 for a total of $500,000 in fundingavailable. A Request for Applications (RFA) wascalled in April 2002. Eligible research areas weredata validation (diabetes case definition, casedefinitions for complications related to diabetes,and community-based screening) and healthservices and population health research (qualityof life, access to diabetes-related health careservices, economic analysis of the burden ofdiabetes).

Seven applications were peer-reviewed by asix-person committee of Canadians andAmericans chaired by Dr. Sam Sheps from theUniversity of British Columbia. Two projects werefunded, and reports are expected by January2005:

� Validation of administrative data algorithmsfor diabetes surveillance in specialpopulations ($92,024) by J. Hux, G. Booth,A. Hanley, T. To, D. Daneman, H. Lee, D.Feig

� Evaluation of co-morbidities andcomplications in relation to hospitaloutcomes for diabetes among Canadianinpatients and general Canadianpopulations ($192,940) by Y. Chen, R.Sigal

References

1. Blanchard JF, Ludwig S, Wajda A, Dean H,Anderson K, Kendall O, Depew N. Incidenceand prevalence of diabetes in Manitoba,1986-1991. Diabetes Care1996;19:807-11.

2. Svenson L. Assessment of the sensitivityand specificity of Alberta Healthadministrative data for diabetessurveillance. Report to NDSS ValidationWorking Group. Edmonton: March 1999.

3. Hux JE. Using administrative data to definethe prevalence of diabetes mellitus inOntario. Report to NDSS ValidationWorking Group. Toronto: ICES, March1999.

4. Tamblay JL, Catlin G. Sample design of theNational Population Health Survey. HealthReports 1995;7:29-38

5. LeBlanc J, Kephart G. Assessment of thesensitivity and specificity of Nova Scotiaadministrative databases for detectingdiabetes mellitus. Report to NDSSValidation Working Group. Halifax:Population Health Research Unit, January1998.

6. Hux JE, Ivis F, Flintoft V, Bica A. Diabetes inOntario: determination of prevalence andincidence using a validated administrativedata algorithm. Diabetes Care 2002;25(3):512-6.

Appendix J

80

7. Van Til L. PEI Diabetes Validation Project,Report to NDSS Validation Working Group.Charlottetown: Document PublishingCentre, March 2001.

8. Young TK, Roos N, Hammerstrand MA.Estimated burden of diabetes mellitus inManitoba according to health insuranceclaims: a pilot study. Can Med Assoc J1991;144(3):318-324.

9. Noseworthy T, Blanchard J, Campbell D,Chapman S, Clottey C, James R, Osei W,Svenson L. Final report: demonstration ofthe proposed national diabetes surveillancesystem in the three Prairie provinces.Report to HISP. March 2001.

10. Clayton D, Smith M, Dunbar P, Salisbury S,Kephart G, LeBlanc J. Validity of theDiabetes Care Program of Nova Scotiadatabase of new cases (DNC) of diabetesaged < 19 years in determining theincidence of type 1 Diabetes Mellitus inthis population. Report to NDSS. Halifax:Validation Working Group, May 2000.

11. Diabetes in Ontario: an ICES practice atlas,2003. Available at URL: www.ICES.on.ca

12. Charlson M, Szatrowski TP, Peterson J, GoldJ. Validation of a combined comorbidityindex. J Clin Epidemiol 1994;47:1245-51.

Appendix J

81

Appendix K

Prevalence

Age-specific Prevalence by Fiscal Year, Sex and Province/Territory

Canada

Age group1997/1998 1998/1999 1999/2000


20-29 Prevalence (%)

� People with diabetes

� Annual population count

0.7

14,8201,997,477

0.4

9,0412,024,463

0.8

16,4541,994,491

0.5

9,8062,023,346

0.9

17,4941,997,640

0.5

10,5622,029,248




1.4

35,1492,528,645

1.0

24,2722,544,838

1.6

40,6262,499,595

1.1

26,8762,515,198

1.8

45,4062,471,874

1.2

28,6832,490,412




2.2

49,6072,289,110

2.6

60,1602,289,206

2.4

56,7872,348,501

2.9

67,3382,349,403

2.6

62,6952,410,680

3.0

72,7852,412,997




4.1

36,708894,409

5.7

50,825898,957

4.5

42,145939,131

6.2

58,092939,131

4.7

46,566985,939

6.4

63,598987,280




6.0

41,374690,681

8.3

56,480684,001

6.5

46,626720,363

9.0

64,048714,799

6.8

50,981750,683

9.5

70,751746,490




8.1

48,840600,281

10.7

62,265579,751

8.9

54,002608,538

11.9

69,613586,737

9.3

57,623619,702

12.5

74,906597,864




10.2

58,906579,798

12.9

69,132535,662

11.0

63,593579,565

14.1

75,923539,503

11.5

66,893579,176

14.9

80,829540,838




11.7

61,870530,424

14.5

62,869433,241

12.7

67,535532,012

15.9

69,956441,247

13.5

71,814533,607

16.9

75,972449,917




12.1

52,132432,184

14.8

45,497306,934

13.2

59,504449,659

16.3

52,428321,181

14.2

65,349461,785

17.4

57,856331,731




11.6

34,280295,571

14.0

25,275180,014

12.8

38,247299,326

15.4

28,064182,152

13.7

42,119307,457

16.7

31,260187,627

85+ Prevalence (%)



9.5

26,337276,946

11.5

14,213123,232

10.6

30,647290,099

12.8

16,685130,019

11.5

35,044305,043

13.8

18,956137,462

Total* Prevalence (%)



4.1

460,02311,115,526

4.5

480,02910,600,299

4.6

516,16611,261,280

5.0

538,82910,745,676

4.9

561,98411,423,586

5.4

586,15810,911,866

CanadianTotal

� People with diabetes** 479,346 500,193 537,848 561,463 585,590 610,780

* for participating jurisdictions** estimated using NDSS prevalence and adjusting for 4.2% of Canadian population in New Brunswick and Newfoundland andLabrador (2001 census)

Appendix K

82

Age-specific Prevalence by Fiscal Year and Sex

Yukon Territory

Age group1997/1998 1998/1999 1999/2000





0.9

232,495

0.4

92,468

1.2

282,384

0.5

122,263

1.1

252,292

0.6

122,117




1.0

343,347

0.6

213,292

1.3

413,198

0.7

203,056

1.4

443,060

0.7

212,830




1.7

523,062

1.5

513,386

1.9

593,110

1.7

583,318

1.9

603,134

1.7

543,267




3.9

38985

4.9

621,273

4.5

471,036

5.0

651,295

4.6

511,111

5.2

671,299




4.8

28582

6.4

52817

4.5

28618

6.2

53851

5.7

37647

6.0

55922




7.5

31413

5.7

30527

10.4

43414

7.2

39542

10.0

42421

8.5

48567




9.3

28300

11.2

47421

7.0

21300

10.9

46422

8.1

26322

10.1

43424




7.3

14192

10.6

25236

14.1

27191

12.2

33270

17.2

35203

14.7

43293




12.1

17140

9.8

13133

9.7

15155

7.9

11140

9.3

14151

10.7

16150

80+ Prevalence (%)



6.1

9148

9.7

10103

7.6

13170

10.6

12113

9.4

17181

14.6

18123

Total Prevalence (%)



2.3

27411,664

2.5

32012,656

2.8

32211,576

2.8

34912,270

3.0

35111,522

3.1

37711,992

Appendix K

83



Age group1997/1998 1998/1999 1999/2000





0.3

123,843

0.3

113,764

0.2

93,659

0.4

143,639

0.3

103,525

0.4

143,460




1.0

424,384

0.8

384,524

1.1

464,263

0.9

394,339

1.0

424,107

0.9

384,149




2.4

753,175

2.3

803,550

2.5

803,251

2.8

1043,664

2.4

773,236

3.0

1083,644




4.1

39961

5.3

681,272

5.5

551,002

5.3

701,320

6.1

661,074

5.6

781,381




6.2

40646

6.9

54786

6.5

43658

8.6

71822

7.0

46660

9.2

76829




6.2

25405

9.1

47515

7.5

32424

8.9

47526

7.9

34432

11.1

57512




9.2

27292

7.3

28382

8.0

25311

10.2

39384

8.7

28321

13.7

54395




12.0

26216

9.7

23237

14.6

31212

9.3

24257

13.6

29214

8.8

23261




9.6

13136

4.1

6147

9.2

14153

6.5

9139

12.6

20159

8.0

11137

80+ Prevalence (%)



11.7

23197

4.3

7161

11.4

22193

4.8

8165

11.7

21179

6.2

10162




2.3

32214,255

2.4

36215,338

2.5

35714,126

2.8

42515,255

2.7

37313,907

3.1

46914,930

Appendix K

84


Nunavut

Age group1997/1998 1998/1999 1999/2000





0.2

53,068

0.1

42,994

0.3

82,978

0.2

52,953

0.2

72,965

0.2

72,899




0.4

122,726

0.2

62,913

0.5

132,887

0.3

93,011

0.6

172,967

0.4

123,113




0.9

141,523

0.8

161,894

1.1

171,588

1.0

201,926

0.8

131,678

1.2

252,008




0.9

5555

1.6

11689

1.4

8582

2.1

16761

2.2

14624

2.3

18797




1.8

7396

2.6

12454

1.4

6435

3.0

15495

2.0

9441

4.0

21525




1.8

5282

2.5

8325

2.3

7309

3.2

11342

3.3

11338

4.7

18384




1.7

3174

4.4

8182

1.7

3181

3.3

7209

2.9

6208

3.3

8239

70+ Prevalence (%)



–

–207

–

–261

–

–236

–

–293

–

–266

–

–318




0.6

548,931

0.7

699,712

0.8

699,196

0.9

899,990

0.9

859,487

1.1

11610,283

Appendix K

85


British Columbia

Age group1997/1998 1998/1999 1999/2000





0.7

1,933270,437

0.4

1,133259,333

0.8

2,132265,240

0.5

1,173253,392

0.8

2,182259,727

0.5

1,187249,203




1.4

4,699336,203

0.9

2,922326,758

1.6

5,412330,789

1.0

3,200320,456

1.8

6,000325,439

1.0

3,302315,659




1.9

6,187320,842

2.4

7,653318,016

2.2

7,126327,697

2.6

8,502322,650

2.3

7,779333,202

2.7

8,974326,834




3.7

4,572122,324

4.9

6,195125,209

4.1

5,307129,066

5.5

7,183131,339

4.3

5,827136,696

5.7

7,857138,518




5.6

5,21393,051

7.6

7,19494,513

6.0

5,83797,474

8.2

8,09698,937

6.3

6,368101,746

8.6

8,877103,361




7.5

5,96579,218

10.1

8,03779,842

8.2

6,67180,861

11.1

8,99881,131

8.6

7,10282,776

11.6

9,60182,649




9.3

7,07375,947

12.0

9,02675,272

10.1

7,70175,881

13.3

10,06575,544

10.7

8,10875,645

14.1

10,67575,715




10.4

7,42171,069

13.0

8,04161,627

11.5

8,16470,726

14.4

9,03362,561

12.3

8,69370,888

15.3

9,79463,989




10.4

6,40261,812

13.3

6,19646,485

11.4

7,31064,063

14.7

7,18048,745

12.4

8,05064,924

15.8

7,83149,604




9.7

4,13342,815

12.8

3,63128,376

10.9

4,69543,233

14.1

4,01328,460

11.6

5,12944,404

15.2

4,48729,452

85+ Prevalence (%)



7.8

3,02238,534

10.5

2,05919,680

8.6

3,52140,953

11.6

2,43921,045

9.4

4,11843,743

12.7

2,85122,492




3.7

56,6201,512,252

4.3

62,0871,435,111

4.2

63,8761,525,983

4.8

69,8821,444,260

4.5

69,3561,539,190

5.2

75,4361,457,476

Appendix K

86


Alberta

Age group1997/1998 1998/1999 1999/2000





0.7

1,435211,313

0.4

899214,861

0.7

1,506217,036

0.4

997221,584

0.7

1,531219,957

0.5

1,067224,898




1.3

3,345255,273

0.8

1,990254,359

1.5

3,796253,954

0.9

2,278253,221

1.6

4,072251,360

1.0

2,464250,403




1.9

4,212224,025

2.2

5,060232,598

2.1

4,895233,818

2.4

5,759242,682

2.3

5,464242,758

2.5

6,275251,586




3.5

2,81579,535

4.8

3,90181,890

3.8

3,24184,473

5.3

4,63386,827

4.1

3,66889,716

5.5

5,07592,439




5.2

3,07259,178

7.1

4,30860,619

5.7

3,51862,129

7.7

4,91963,743

5.9

3,85265,020

8.3

5,53766,879




6.9

3,44150,135

9.1

4,59250,528

7.4

3,78251,347

10.2

5,23551,384

7.9

4,11252,368

10.8

5,67252,511




8.7

4,06946,741

10.9

5,00645,919

9.5

4,47847,037

12.0

5,60746,586

9.8

4,62247,349

12.7

5,95546,915




9.8

3,99940,647

12.6

4,46535,539

10.8

4,44441,314

13.7

5,04236,798

11.4

4,78841,923

14.5

5,51438,057




10.0

3,39134,051

12.8

3,25925,392

11.1

3,90435,198

14.2

3,74826,371

11.8

4,20835,524

15.4

4,14526,890




9.7

2,29923,631

12.4

1,88715,181

10.5

2,52524,030

13.8

2,13715,534

11.3

2,78224,651

14.7

2,33215,816

85+ Prevalence (%)



8.4

1,87822,468

10.7

1,18211,069

9.3

2,19423,599

11.7

1,33411,393

10.1

2,45424,250

13.1

1,51711,566




3.2

33,9561,046,997

3.6

36,5491,027,955

3.6

38,2831,073,935

3.9

41,6891,056,123

3.8

41,5531,094,876

4.2

45,5531,077,960

Appendix K

87


Saskatchewan

Age group1997/1998 1998/1999 1999/2000





0.7

51470,067

0.5

36073,352

0.8

55770,732

0.5

37874,573

0.8

57471,723

0.5

41075,634




1.3

1,03978,278

1.0

81878,569

1.5

1,14076,710

1.2

92877,495

1.6

1,22074,991

1.3

96875,994




2.5

1,80471,597

2.7

1,99874,458

2.7

2,01873,739

3.0

2,26676,556

2.8

2,13175,911

3.0

2,37078,590




4.5

1,18026,197

5.7

1,55627,120

4.8

1,32727,554

6.2

1,77128,410

4.8

1,40028,969

6.3

1,90229,979




6.2

1,34921,720

8.0

1,72621,592

6.6

1,47622,220

8.8

1,95022,283

6.9

1,56122,670

9.0

2,06522,912




7.6

1,53520,287

10.3

2,04919,904

8.4

1,68620,105

11.2

2,20619,733

8.7

1,75520,200

11.4

2,26719,802




8.8

1,79120,321

12.0

2,35319,558

9.4

1,88120,074

13.1

2,52019,267

9.9

1,96319,781

13.5

2,56218,971




10.8

2,13919,855

13.6

2,37217,394

11.5

2,26119,720

14.8

2,55817,310

11.8

2,29219,403

15.5

2,67217,234




10.9

1,98118,168

14.6

2,03513,926

12.0

2,17518,089

16.1

2,27414,108

12.5

2,26218,070

16.6

2,34514,148




10.9

1,56014,298

14.2

1,3599,579

11.7

1,68114,353

15.2

1,4579,606

12.0

1,75214,599

16.3

1,5669,596

85+ Prevalence (%)



9.0

1,27814,277

12.0

9067,525

9.9

1,47514,911

13.4

1,0397,761

10.5

1,62715,519

14.3

1,1528,057




4.3

16,170375,065

4.8

17,532362,977

4.7

17,677378,207

5.3

19,347367,102

4.9

18,537381,836

5.5

20,279370,917

Appendix K

88


Manitoba

Age group1997/1998 1998/1999 1999/2000





0.9

70080,186

0.6

46082,008

1.0

78679,363

0.6

51480,620

1.1

83478,756

0.7

56680,164




1.8

1,67192,502

1.4

1,26793,839

2.1

1,86090,320

1.5

1,38891,553

2.3

2,03588,651

1.7

1,51089,507




3.2

2,73885,419

3.3

2,86285,772

3.6

3,10086,488

3.7

3,19086,854

3.9

3,40787,865

3.8

3,39988,498




5.9

1,94833,130

6.7

2,25633,561

6.5

2,25334,737

7.4

2,59134,971

6.8

2,46336,482

8.0

2,91036,334




7.7

2,01126,057

8.8

2,24525,639

8.3

2,22826,831

9.7

2,57626,585

8.9

2,46427,616

10.5

2,90827,757




9.7

2,18522,564

11.6

2,56022,087

10.5

2,41022,847

12.7

2,81922,217

11.3

2,60223,011

13.5

3,00622,319




11.0

2,49222,634

13.0

2,70720,801

12.2

2,69722,137

14.5

3,00820,690

13.0

2,84221,818

15.9

3,25220,474




11.9

2,64822,316

14.4

2,61518,151

13.0

2,83821,835

15.6

2,83018,103

13.8

2,97421,477

16.9

3,04518,068




11.6

2,32220,065

13.6

1,95114,305

12.7

2,62320,590

15.5

2,25414,524

14.1

2,91220,647

16.7

2,46714,742




10.9

1,63514,956

12.6

1,1889,401

11.9

1,77114,907

14.0

1,3089,326

13.2

1,97114,931

15.2

1,4069,252

85+ Prevalence (%)



8.3

1,23514,871

11.3

7937,030

9.3

1,43015,408

12.2

8967,341

10.2

1,64916,131

13.0

9927,612




5.0

21,585434,700

5.1

20,904412,594

5.5

23,996435,463

5.7

23,374412,784

6.0

26,153437,385

6.1

25,461414,727

Appendix K

89


Ontario

Age group1997/1998 1998/1999 1999/2000





0.8

6,431803,717

0.5

3,919811,280

0.9

7,271802,624

0.5

4,333811,191

1.0

7,976806,980

0.6

4,789816,213




1.5

15,8771,041,079

1.1

11,2681,049,639

1.8

18,7401,041,354

1.2

12,6351,049,776

2.1

21,5871,044,054

1.3

13,8131,053,776




2.4

21,542910,722

2.9

26,387903,353

2.7

25,003938,173

3.2

29,703932,730

2.9

28,382970,112

3.4

33,165967,532




4.3

15,547358,099

6.1

21,778359,875

4.8

17,999377,273

6.6

25,064378,637

5.2

20,567397,842

7.1

28,135397,832




6.2

17,370278,154

8.6

23,717274,985

6.9

19,863289,115

9.4

27,038286,576

7.4

22,142300,782

10.2

30,381299,148




8.5

20,783244,012

11.2

26,464235,378

9.3

23,115248,977

12.4

29,635239,437

9.9

25,167253,989

13.3

32,416244,360




10.4

24,455235,200

13.3

29,009218,307

11.3

26,639235,546

14.5

31,799220,042

12.2

28,741236,375

15.7

34,616220,972




11.6

25,494219,417

14.5

26,243180,479

12.7

27,828219,469

15.9

29,282183,787

13.7

30,182220,157

17.2

32,353187,789




11.8

20,650175,561

14.8

18,710126,807

13.0

24,053185,093

16.3

21,837134,200

14.1

26,969191,826

17.6

24,581139,554




11.2

12,990115,960

13.9

10,04272,173

12.3

14,468117,382

15.3

11,15373,096

13.4

16,338121,752

16.4

12,56776,412

85+ Prevalence (%)



9.1

10,373114,589

11.1

5,57850,161

10.1

12,089119,715

12.4

6,58553,314

11.1

13,956125,895

13.2

7,51456,956




4.3

191,5124,496,510

4.7

203,1154,282,437

4.7

217,0684,574,721

5.3

229,0644,362,786

5.2

242,0074,669,764

5.7

254,3304,460,544

Appendix K

90


Quebec

Age group1997/1998 1998/1999 1999/2000





0.7

3,189475,195

0.4

1,800497,742

0.7

3,514474,044

0.4

1,915497,579

0.8

3,691475,725

0.4

2,035499,548




1.2

7,237622,102

0.8

4,967643,339

1.4

8,260605,247

0.8

5,288625,992

1.5

9,051587,489

0.9

5,445609,707




1.9

10,853582,749

2.3

13,508582,294

2.0

12,087593,300

2.5

14,959594,166

2.1

12,864603,472

2.6

15,554604,835




3.7

8,745237,477

5.4

12,703233,163

4.0

9,829246,411

5.8

14,124241,913

4.1

10,323254,727

5.9

14,831250,252




5.6

10,363184,089

8.2

14,669178,038

5.9

11,461192,971

8.8

16,537186,877

6.0

12,214201,947

9.1

17,800195,242




7.9

12,597160,168

10.7

15,791148,175

8.6

13,776159,959

11.8

17,568148,314

8.8

14,223162,379

12.3

18,609151,241




10.5

16,390156,747

13.4

18,080135,102

11.1

17,393156,639

14.4

19,696136,432

11.4

17,720155,663

14.9

20,368136,432




12.8

17,485136,795

15.9

16,407103,446

13.7

18,998138,577

17.2

18,178105,847

14.2

19,809139,496

18.0

19,397107,751




14.3

14,823103,934

16.7

11,17666,912

15.4

16,673107,952

18.3

12,79570,050

16.1

18,087112,331

19.1

14,02673,472




14.1

9,88670,256

15.9

5,89036,929

15.5

11,13171,659

17.4

6,56337,733

16.4

11,98572,900

19.0

7,31038,509

85+ Prevalence (%)



12.3

7,24658,827

13.7

3,00521,928

13.6

8,41461,660

15.4

3,56923,114

14.7

9,55864,998

16.3

4,00024,505




4.3

118,8142,788,339

4.5

117,9962,647,068

4.7

131,5362,808,419

4.9

131,1922,668,017

4.9

139,5252,831,127

5.2

139,3752,691,494

Appendix K

91

* for participating jurisdictions

** estimated using NDSS deaths and adjusting for 4.2% of Canadian population in New Brunswick and Newfoundland and Labrador (2001 census)



Age group1997/1998 1998/1999 1999/2000





0.8

7710,151

0.7

7410,574

0.9

869,891

0.7

7710,305

0.9

879,723

0.8

7710,134




1.0

11911,520

1.1

12511,264

1.3

14511,100

1.3

14410,917

1.4

15510,834

1.2

13310,757




1.9

20410,805

2.7

28710,671

2.3

25010,701

3.1

33010,560

2.3

25210,894

3.3

35610,673




3.9

1724,355

5.6

2474,415

4.2

1934,583

6.4

2934,603

4.5

2184,864

6.1

2964,872




5.7

1853,252

8.0

2613,279

6.6

2253,398

8.5

2913,415

6.4

2283,564

9.3

3253,493




6.9

2002,900

8.8

2502,840

8.0

2342,915

10.8

3112,880

8.9

2642,953

11.4

3422,987




9.2

2432,639

13.3

3382,537

10.7

2842,643

14.3

3642,548

10.7

2882,697

14.2

3672,581




10.6

2562,424

14.5

2962,039

11.6

2812,418

16.5

3442,079

12.0

2912,426

17.3

3612,081




12.1

2812,313

14.8

2361,592

13.6

3102,276

16.7

2641,585

13.6

2992,198

17.7

2881,627




11.5

2031,759

13.9

1471,061

13.5

2381,760

16.0

1681,050

15.1

2711,800

16.2

1651,016

85+ Prevalence (%)



9.2

1671,817

9.2

77837

9.5

1771,854

11.5

99859

10.2

1981,948

13.6

122897




3.9

2,10753,935

4.6

2,33851,109

4.5

2,42353,539

5.3

2,68550,801

4.7

2,55153,901

5.5

2,83251,118

Appendix K

92


Nova Scotia

Age group1997/1998 1998/1999 1999/2000





0.7

50167,005

0.6

37266,087

0.8

55766,540

0.6

38865,247

0.9

57766,267

0.6

39864,978




1.3

1,07481,231

1.1

85076,342

1.5

1,17379,773

1.3

94775,382

1.5

1,18378,922

1.3

97774,517




2.6

1,92675,191

3.1

2,25873,214

2.8

2,15276,636

3.3

2,44774,297

2.9

2,26678,418

3.3

2,50575,530




5.3

1,64730,791

6.7

2,04830,490

5.8

1,88632,414

7.1

2,28232,015

5.8

1,96933,834

7.2

2,42933,577




7.4

1,73623,556

9.6

2,24223,279

7.9

1,94124,514

10.3

2,50224,215

8.1

2,06025,590

10.6

2,70625,422




10.4

2,07319,897

12.4

2,43719,630

11.0

2,24620,380

13.6

2,74420,231

11.1

2,31120,835

14.0

2,87020,532




12.4

2,33518,803

14.7

2,53017,181

13.1

2,47118,816

16.0

2,77217,379

13.4

2,54918,997

16.5

2,92917,720




13.7

2,38617,406

17.0

2,38013,969

15.2

2,65817,449

18.6

2,63014,102

15.7

2,71517,298

19.4

2,76714,250




14.1

2,25215,949

17.1

1,91311,157

15.1

2,42716,029

18.3

2,05311,229

15.9

2,52815,897

18.9

2,14311,314




13.3

1,55311,672

15.7

1,1197,125

14.6

1,71311,772

17.5

1,2527,145

15.3

1,86212,194

19.1

1,4077,363

85+ Prevalence (%)



9.9

1,12611,377

12.5

6084,868

11.3

1,33511,792

14.2

7165,046

11.9

1,47312,339

15.3

7995,222




5.0

18,609372,878

5.5

18,757343,342

5.5

20,559376,115

6.0

20,733346,288

5.6

21,493380,591

6.3

21,930350,425

Appendix K

93

Appendix L

Mortality

Age-specific Mortality by Fiscal Year, Sex and Province/Territory

Canada

Age group 1997/1998 1998/1999 1999/2000


20-29 Diabetes� deaths� population count

No diabetes� deaths� population count

Mortality rate ratio

2614,815

6181,979,594

5.62

259,037

1,7272,012,432

3.22

2016,446

5411,975,067

4.44

189,801

1,6272,010,592

2.27

2017,487

5601,977,188

4.04

2510,555

1,5952,015,794

2.99




7735,137

1,3092,490,782

4.17

11024,266

2,7852,517,659

4.10

7240,613

1,2222,456,095

3.56

8926,867

2,4792,485,320

3.32

10245,389

1,1862,423,518

4.59

11728,671

2,4142,458,628

4.16




23849,593

2,8562,237,994

3.76

41360,144

4,5632,227,168

3.35

24756,770

2,8142,290,143

3.54

46467,318

4,1962,280,159

3.75

28362,682

2,9022,346,320

3.65

51572,760

4,5052,338,229

3.67




30836,703

2,117857,151

3.40

57350,814

3,307847,454

2.89

33842,137

2,161896,412

3.33

56058,076

3,181883,254

2.68

35746,552

2,209938,763

3.26

59763,580

3,261922,903

2.66




48641,367

2,584648,918

2.95

94956,468

4,110627,079

2.56

52846,620

2,600673,308

2.93

89964,033

3,920650,271

2.33

54850,972

2,661699,270

2.83

1,03170,730

3,987675,235

2.47




81748,835

3,495551,164

2.64

1,55862,257

5,525517,169

2.34

84553,995

3,238554,234

2.68

1,52369,602

5,249516,793

2.15

87757,612

3,284561,752

2.60

1,63774,888

5,218522,592

2.19




1,46158,903

5,264520,721

2.45

2,47469,124

8,605466,356

1.94

1,42363,590

4,885515,794

2.36

2,64575,916

7,994463,378

2.02

1,51566,887

4,798512,081

2.42

2,60880,821

7,632459,778

1.94

Appendix L

94

Canada (continued)

Age group 1997/1998 1998/1999 1999/2000





2,37961,868

7,481468,469

2.41

3,38262,867

11,049370,250

1.80

2,30367,530

7,227464,381

2.19

3,62469,954

10,470371,160

1.84

2,34071,808

7,166461,677

2.10

3,68875,969

10,326373,804

1.76




2,97652,132

10,653379,997

2.04

3,68545,495

12,790261,361

1.66

3,13859,504

10,244390,094

2.01

4,06152,425

12,577268,666

1.65

3,38365,349

10,303396,378

1.99

4,36757,853

12,348273,785

1.67




3,04534,279

13,095261,256

1.77

3,11725,275

12,724154,702

1.50

3,28638,245

12,482261,043

1.80

3,31028,063

12,218154,046

1.49

3,42042,117

12,332265,298

1.75

3,55631,259

11,450156,320

1.55

85+ Diabetes� deaths� population count



4,45926,337

30,729250,580

1.38

2,82614,213

16,691108,997

1.30

4,89230,647

30,287259,416

1.37

3,24516,685

16,604113,307

1.33

5,36435,044

30,270269,955

1.37

3,46118,956

16,618118,473

1.30

Total* Diabetes� deaths� population count



16,272459,969

80,20110,646,626

4.70

19,112479,960

83,87610,110,627

4.80

17,092516,097

77,70110,735,987

4.58

20,438538,740

80,51510,196,946

4.80

18,209561,899

77,67110,852,200

4.53

21,602586,042

79,35410,315,541

4.79

CanadianTotal

Diabetes� deaths** 16,955 19,915 17,810 21,296 18,974 22,509

Appendix L

95

Age-specific Mortality by Fiscal Year and Sex

Yukon Territory

Age group1997/1998 1998/1999 1999/2000





*206

2110,678

*

*225

3411,538

*

*246

1610,514

*

*247

4011,078

*

*259

1910,406

*

*257

4810,745

*




11474

6517,931

6.4

*520

5417,640

*

12548

7317,456

5.24

Total Diabetes� deaths� population count



7274

3911,390

7.46

6320

6212,336

3.73

6322

4611,254

4.56

4349

6911,921

1.98

5351

4211,171

3.79

11377

8811,615

3.85

* cell suppressed

Appendix L

96



Age group1997/1998 1998/1999 1999/2000





*233

3513,181

*

*298

7214,113

*

*265

4412,992

*

*345

7713,965

*

*275

2512,759

*

*371

3713,604

*




9563

11320,329

2.88

11651

11720,313

2.93

*704

6720,036

*




10322

7013,933

6.18

4362

13014,976

1.27

9357

9313,769

3.73

5425

13714,830

1.27

7373

5213,534

4.88

2469

7914,461

0.78

* cell suppressed

Appendix L

97


British Columbia

Age group1997/1998 1998/1999 1999/2000





01,933

91268,504

0

01,133

310258,200

0

02,132

66263,108

0

51,173

188252,219

5.72

02,182

61257,545

0

01,187

166248,016

0




84,699

217331,504

2.6

162,922

457323,836

3.88

85,412

152325,377

3.16

73,200

286317,256

2.43

106,000

132319,439

4.03

93,302

280312,357

3.04




246,187

410314,655

2.98

457,653

638310,363

2.86

207,126

372320,571

2.42

358,502

536314,148

2.41

277,779

320325,423

3.53

578,974

521317,860

3.88




364,572

281117,752

3.3

646,195

456119,014

2.7

325,307

279123,759

2.67

567,183

373124,156

2.6

355,827

256130,869

3.07

537,857

378130,661

2.33




545,213

34387,838

2.65

1127,194

53887,319

2.53

525,837

32291,637

2.54

948,096

46490,841

2.27

496,368

33595,378

2.19

1078,877

44894,484

2.54




895,965

40573,253

2.7

1678,037

65471,805

2.28

866,671

39574,190

2.42

1538,998

59772,133

2.05

817,102

39375,674

2.2

1789,601

59173,048

2.29




1407,073

66368,874

2.06

2799,026

1,09466,246

1.87

1457,701

61368,180

2.09

30110,065

96865,479

2.02

1438,108

56967,537

2.09

28610,675

88365,040

1.97

Appendix L

98

British Columbia (continued)

Age group1997/1998 1998/1999 1999/2000





2457,421

93163,648

2.26

4028,041

1,43653,586

1.87

2398,164

92162,562

1.99

3909,033

1,30653,528

1.77

2508,693

85462,195

2.09

4489,794

1,24954,195

1.98




3566,402

1,45055,410

2.12

4436,196

1,67940,289

1.72

3307,310

1,36156,753

1.88

5177,180

1,70041,565

1.76

3878,050

1,35356,874

2.02

5667831

1,59841,773

1.89




3364,133

1,84938,682

1.70

4123,631

1,76124,745

1.59

3784,695

1,61738,538

1.92

4304,013

1,72224,447

1.52

3905,129

1,65539,275

1.80

4654,487

1,67124,965

1.55




4893,022

3,91335,512

1.47

3882,059

2,43617,621

1.36

5053,521

3,99837,432

1.34

4492,439

2,49618,606

1.37

5954,118

3,95039,625

1.45

4822,851

2,58319,641

1.29




1,77756,620

10,5531,455,632

4.33

2,32862,087

11,4591,373,024

4.49

1,79563,876

10,0961,462,107

4.07

2,43769,882

10,6361,374,378

4.51

1,96769,356

9,8781,469,834

4.22

2,65175,436

10,3681,382,040

4.68

Appendix L

99


Alberta

Age group1997/1998 1998/1999 1999/2000





01,435

80209,878

0

0899

201213,962

0

01,506

76215,530

0

0997

197220,587

0

01,531

68218,426

0

01,067

193223,831

0




123,345

149251,928

6.07

61,990

312252,369

2.44

103796

131250,158

5.03

72,278

295250,943

2.61

84,072

118247,288

4.12

122,464

258247,939

4.68




214,212

262219,813

4.18

325,060

468227,538

3.07

264,895

268228,923

4.54

485,759

424236,923

4.66

255,464

288237,294

3.77

426,275

452245,311

3.63




152,815

17476,720

2.35

293,901

27477,989

2.12

213,241

21581,232

2.45

414,633

28082,194

2.6

343,668

19786,048

4.05

345,075

27587,364

2.13




343,072

22656,106

2.75

624,308

35556,311

2.28

343,518

22358,611

2.54

444,919

34158,824

1.54

383,852

22761,168

2.66

595,537

36361,342

1.80




603,441

30046,694

2.71

1134,592

49045,936

2.31

573,782

26547,565

2.71

895,235

46046,149

1.71

614,112

27048,256

2.65

1195,672

45046,839

2.18




924,069

45642,672

2.12

1575,006

70840,913

1.81

824,478

37842,559

2.06

1785,607

67340,979

1.93

994,622

41242,727

2.22

1685,955

67340,960

1.72

Appendix L

100

Alberta (continued)

Age group1997/1998 1998/1999 1999/2000





1403,999

61736,648

2.08

1824,465

84431,074

1.50

1484,444

51736,870

2.38

2335,042

88231,756

1.66

1334,788

59637,135

1.73

2165,514

87232,543

1.46




1873,391

83830,660

2.02

2383,259

1,03622,133

1.56

2013,904

75731,294

2.13

2483,748

97722,623

1.53

1924,208

81931,316

1.74

3144,145

97022,745

1.78




1822,299

1,05021,332

1.61

2101,887

1,02613,294

1.44

1842,525

96421,505

1.63

2092,137

1,01313,397

1.29

2052,782

98821,869

1.63

2562,332

97213,484

1.52




2931,878

2,50120,590

1.28

2391,182

1,5889,887

1.26

3472,194

2,40021,405

1.41

2341,334

1,47210,059

1.2

3662,454

2,46421,796

1.32

2681,517

1,49910,049

1.18




1,03633,956

6,6531,013,041

4.65

1,26836,549

7,302991,406

4.71

1,11038,283

6,1941,035,652

4.85

1,33141,689

7,0141,014,434

4.62

1,16141,553

6,4471,053,323

4.56

1,48845,553

6,9771,032,407

4.83

Appendix L

101


Saskatchewan

Age group1997/1998 1998/1999 1999/2000





0514

3569,553

0

0360

6872,992

0

0557

2570,175

0

0378

9074,195

0

0574

3371,149

0

0410

7775,224

0




01,039

5277,239

0

0818

11577,751

0

01,140

5275,570

0

0928

8876,567

0

01,220

5273,771

0

0968

10075,026

0




61,804

10869,793

2.15

161,998

15672,460

3.72

102,018

10771,721

3.32

152,266

14574,290

3.39

142,131

9873,780

4.95

162,370

16676,220

3.1




131,180

6725,017

4.11

161,556

10925,564

2.41

91,327

6226,227

2.87

221,771

11126,639

2.98

141,400

7627,569

3.63

321,902

13128,077

3.61




141,349

7320,371

2.9

301,726

12019,866

2.88

281,476

8420,744

4.68

311,950

15620,333

2.07

231,561

9421,109

3.31

342,065

13320,847

2.58




301,535

13418,752

2.73

522,049

21617,855

2.1

311,686

11118,419

3.05

502,206

17917,527

2.22

281,755

11218,445

2.63

592,267

21417,535

2.13




481,791

19118,530

2.60

922,353

30117,205

2.23

491,881

18818,193

2.52

902,520

28816,747

2.08

531,963

16817,818

2.86

982,562

27916,409

2.25

Appendix L

102

Saskatchewan (continued)

Age group1997/1998 1998/1999 1999/2000





832,139

26217,716

2.62

1322,372

43215,022

1.94

832,261

28217459

2.27

1572,558

43514,752

2.08

822,292

25617,111

2.39

1612,672

41014,562

2.14




1041,981

46416,187

1.83

1392,035

58311,891

1.39

1062,175

37815,914

2.05

1842,274

60911,834

1.57

1162,262

40615,808

2

2082,345

54111,803

1.94




1211,560

57512,738

1.72

1381,359

6298,220

1.33

1191,681

53112,672

1.69

1511,457

6388,149

1.32

1301,752

55712,847

1.71

1921,566

5768,030

1.71




1851,278

1,52312,999

1.24

163906

9666,619

1.23

2361,475

1,56413,436

1.37

1941,039

1,0166,722

1.24

2381,627

1,55813,892

1.3

2101,152

1,0196,905

1.24




60416,170

3,484358,895

3.85

77817,532

3,695345,445

4.15

67117677

3,384360,530

4.04

89419,347

3,755347,755

4.28

69818,537

3,410363,299

4.01

1,01020,279

3,646350,638

4.79

Appendix L

103


Manitoba

Age group1997/1998 1998/1999 1999/2000





0700

3179,486

0

0460

7981,548

0

0786

3278,577

0

0514

8280,106

0

0834

3877,922

0

0566

8079,598

0




71,671

5290,831

7.32

01,267

10292,572

0

01,860

6188,460

0

51,388

10490,165

3.12

92,035

6486,616

5.99

01,510

9387,997

0




132,738

10682,681

3.7

172,862

16182,910

3.06

163,100

9283,388

4.68

383,190

14783,664

6.78

203,407

11984,458

4.17

283,399

19885,099

3.54




131,948

7631,182

2.74

222,256

11731,305

2.61

212,253

8532,484

3.56

312,591

10932,380

3.55

222,463

10134,019

3.01

332,910

13333,424

2.85




222,011

9624,046

2.74

392,245

15823,394

2.57

342,228

12024,603

3.13

372,576

16024,009

2.16

262,464

11125,152

2.39

612,908

15624,849

3.34




432,185

12320,379

3.26

542,560

19619,527

2.1

482,410

15420,437

2.64

742,819

25619,398

1.99

372,602

14220,409

2.04

843,006

19219,313

2.81




712,492

20020,142

2.87

982,707

33218,094

1.97

622,697

20519,440

2.18

1123,008

32517,682

2.03

692,842

18918,976

2.44

1013,252

36117,222

1.48

Appendix L

104

Manitoba (continued)

Age group1997/1998 1998/1999 1999/2000





1062,648

28019,668

2.81

1172,615

43315,536

1.61

1142,838

31318,997

2.44

1482,830

44615,273

1.79

842,974

28718,503

1.82

1643,045

44415,023

1.82




1232,322

47417,743

1.98

1391,951

62812,354

1.4

1522,623

53517,967

1.95

1832,254

59812,270

1.67

1622,912

46017,735

2.14

1772,467

62112,275

1.42




1401,635

64013,321

1.78

1411,188

6568,213

1.49

1421,771

62713,136

1.68

1671,308

6838,018

1.5

1521,971

60312,960

1.66

1461,406

5967,846

1.37




2141,235

1,59113,636

1.49

148793

9166,237

1.27

1951,430

1,70613,978

1.12

180896

9956,445

1.3

2351,649

1,62314,482

1.27

191992

9686,620

1.32




75221,585

3,669413,115

3.92

77520,904

3,778391,690

3.84

78423,996

3,930411,467

3.42

97523,374

3,905389,410

4.16

81626,153

3,737411,232

3.43

98525,461

3,842389,266

3.92

Appendix L

105


Ontario

Age group1997/1998 1998/1999 1999/2000





116,431

188797,286

7.25

133,919

485807,361

5.52

127,271

169795,353

7.77

84,333

481806,858

3.1

117,976

170799,004

6.48

154,789

473811,424

5.37




2715,877

4431,025,202

3.94

4211,268

9341,038,371

4.14

2718,740

4401,022,614

3.35

4212,635

8411,037,141

4.1

4421,587

4271,022,467

4.88

5513,813

8191,039,963

5.06




9121,542

1,014889,180

3.7

17026,387

1,579876,966

3.58

10125,003

1,001913,170

3.69

16829,703

1,386903,027

3.69

10828,382

1,012941,730

3.54

20433,165

1,536934,367

3.74




12415,547

806342,552

3.39

23921,778

1,177338,097

3.15

13417,999

773359,274

3.46

22425,064

1,118353,573

2.83

13520,567

896377,275

2.76

26428,135

1,212369,697

2.86




16817,370

972260,784

2.59

36423,717

1,475251,268

2.61

22519,863

946269,252

3.22

33427,038

1,376259,538

2.33

22322,142

1,004278,640

2.8

40830,381

1,463268,767

2.47




32420,783

1,369223,229

2.54

62326,464

2,046208,914

2.4

32723,115

1,242225,862

2.57

62029,635

1,946209,802

2.26

35825,167

1,282228,822

2.54

63332,416

1,940211,944

2.13




56024,455

2,018210,745

2.39

98229,009

3,175189,298

2.02

58026,639

1,879208,907

2.42

1,01031,799

2,950188,243

2.03

62228,741

1,890207,634

2.38

1,00734,616

2,809186,356

1.93

Appendix L

106

Ontario (continued)

Age group1997/1998 1998/1999 1999/2000





96625,494

3,027193,923

2.43

1,37226,243

4,316154,236

1.87

90427,828

2,779191,641

2.24

1,42929,282

4,039154,505

1.87

93130,182

2,878189,975

2.04

1,47632,353

4,017155,436

1.77




1,15620,650

4,147154,911

2.09

1,49918,710

4,943108,097

1.75

1,25224,053

4,137161,040

2.03

1,61921,837

4,848112,363

1.72

1,32726,969

4,231164,857

1.92

1,73424,581

4,891114,973

1.66




1,21712,990

4,965102,970

1.94

1,22610,042

4,79662,131

1.58

1,24314,468

4,842102,914

1.83

1,30911,153

4,52161,943

1.61

1,31716,338

4,777105,414

1.78

1,36312,567

4,39363,845

1.58




1,79310,373

12,367104,216

1.46

1,0975,578

6,31644,583

1.39

1,95212,089

11,843107,626

1.47

1,3086,585

6,25346,729

1.48

2,10313,956

12,166111,939

1.39

1,3517,514

6,38649,442

1.39




6,437191,512

31,3164,304,998

4.62

7,627203,115

31,2424,079,322

4.9

6,757217,068

30,0514,357,653

4.51

8,071229,064

29,7594,133,722

4.89

7,179242,007

30,7334,427,757

4.27

8,510254,330

29,9394,206,214

4.7

Appendix L

107


Quebec

Age group1997/1998 1998/1999 1999/2000





153,189

161472,006

13.79

121,800

501495,942

6.6

83,514

135470,530

7.93

51,915

494495,664

2.62

93,691

150472,034

7.67

102,035

542497,513

4.51




187,237

350614,865

4.37

394,967

743638,372

6.75

268,260

342596,987

5.49

285,288

772620,704

4.26

239,051

345578,438

4.26

365,445

754604,262

5.3




7410,853

840571,896

4.64

12113,508

1,357568,786

3.75

6612,087

859581,213

3.69

13814,959

1,375579,207

3.89

8212,864

947590,608

3.98

15215,554

1,416589,281

4.07




1008,745

613228,732

4.27

17812,703

1,005220,460

3.07

1089,829

651236,582

3.99

17014,124

1,022227,789

2.68

10410,323

596244,404

4.13

15414,831

980235,421

2.49




17610,363

737173,726

4

29414,669

1,260163,369

2.6

14111,461

784181,510

2.85

31716,537

1,244170,340

2.62

16712,214

778189,733

3.33

32217,800

1,247177,442

2.57




23212,597

994147,571

2.73

50415,791

1,688132,384

2.50

26513,776

930146,183

3.02

47417,568

1,565130,746

2.25

25714,223

950148,156

2.82

48818,609

1,611132,632

2.16




48316,390

1,486140,357

2.78

77618,080

2,595117,022

1.94

43617,393

1,428139,246

2.44

84019,696

2,445116,736

2.04

46917,720

1,367137,943

2.67

83620,368

2,304116,064

2.07

Appendix L

108

Quebec (continued)

Age group1997/1998 1998/1999 1999/2000





75417,485

2,052119,310

2.51

1,03216,407

3,11887,039

1.76

71518,998

2,084119,579

2.16

1,12218,178

2,94987,669

1.83

74119,809

1,990119,687

2.25

1,06419,397

2,90388,354

1.67




91914,823

2,80589,111

1.97

1,06411,176

3,31255,736

1.6

96116,673

2,63591,279

2

1,15612,795

3,28257,255

1.58

1,04718,087

2,59794,244

2.1

1,18914,026

3,14359,446

1.6




9029,886

3,40460,370

1.62

8505,890

3,22931,039

1.39

1,06111,131

3,31060,528

1.74

8916,563

3,06831,170

1.38

1,05311,985

3,18860,915

1.68

9437,310

2,68131,199

1.5




1,2887,246

7,29951,581

1.26

6663,005

3,61918,923

1.16

1,4308,414

7,38353,246

1.23

7543,569

3,53219,545

1.17

1,5889,558

7,03255,440

1.31

8004,000

3,41320,505

1.2




4,961118,814

20,7412,669,525

5.37

5,536117,996

22,4272,529,072

5.29

5,217131,536

20,5412,676,883

5.17

5,895131,192

21,7482,536,825

5.24

5,540139,525

19,9402,691,602

5.36

5,994139,375

20,9942,552,119

5.23

Data source for the number of deaths among non-diabetic people : Registre des événements démographiques du Québec (1997, 1998,1999 and 2000). Data from the Fichier des décès of 2000 are preliminary.

Appendix L

109



Age group1997/1998 1998/1999 1999/2000





*957

6242,026

*

*1,244

12341,799

*

*1,133

6341,455

*

*1,446

11241,234

*

*1,204

7341,628

*

*1,529

11441,387

*




8243

282,396

2.82

11338

472,199

1.52

7284

252,359

2.33

11364

412,184

1.61

6288

172,409

2.95

12367

392,214

1.86




0256

362,168

0

15296

561,743

1.58

12281

382,137

2.4

19344

611,735

1.57

10291

332,135

2.22

16361

511,720

1.49




16281

442,032

2.63

21236

751,356

1.61

12310

561,966

1.36

19264

731,321

1.3

12299

521,899

1.47

17288

741,339

1.07




12203

751,556

1.23

8147

78914

0.64

15238

821,522

1.17

24168

92882

1.37

25271

671,529

2.11

20165

78851

1.32




30167

2201,650

1.35

777

120760

0.58

23177

1871,677

1.17

1399

109760

0.92

26198

2121,750

1.08

24122

128775

1.19




662,107

46551,828

3.49

622,338

49948,771

2.59

692,423

45151,116

3.23

982,685

48848,116

3.6

842,551

45451,350

3.72

1022,832

48448,286

3.59

* cell suppressed

Appendix L

110


Nova Scotia

Age group1997/1998 1998/1999 1999/2000





0501

2666,504

0

0372

5265,715

0

0557

2465,983

0

0388

5264,859

0

0577

2665,690

0

0398

4864,580

0




51,074

4180,157

9.10

7850

8675,492

7.23

01,173

3678,600

0

0947

6674,435

0

81,183

3977,739

13.48

5977

7873,540

4.83




71,926

9573,265

2.80

112,258

16170,956

2.15

82,152

9174,484

3.04

212,447

13371,850

4.64

62,266

9376,152

2.17

162,505

16273,025

2.88




71,647

7729,144

1.61

242,048

13928,442

2.40

121,886

7830,528

2.49

152,282

13729,733

1.43

131,969

6631,865

3.19

262,429

11831,148

2.83




171,736

11221,820

1.91

482,242

15921,037

2.83

141,941

9122,573

1.79

352,502

14321,713

2.12

222,060

8823,530

2.86

342,706

14722,716

1.94




382,073

13217,824

2.48

442,437

19117,193

1.63

302,246

11218,134

2.16

562,744

20417,487

1.75

482,311

11118,524

3.47

672,870

18717,662

2.20




562,335

20916,468

1.89

782,530

32814,651

1.38

612,471

15716,345

2.57

1012,772

28114,607

1.89

512,549

17816,448

1.85

972,929

26514,791

1.85

Appendix L

111

Nova Scotia (continued)

Age group1997/1998 1998/1999 1999/2000





852,386

26315,020

2.03

1262,380

39711,589

1.55

852,658

28514,791

1.66

1242,630

33311,472

1.62

1072,715

26114,583

2.20

1382,767

35611,483

1.61




1132,252

42313,697

1.62

1411,913

5199,244

1.31

1242,427

36913,602

1.88

1342,053

4729,176

1.27

1372,528

37213,369

1.95

1602,143

4939,171

1.39




1291,553

53110,119

1.58

1321,119

5356,006

1.32

1401,713

48810,059

1.68

1291,252

4705,893

1.29

1481,862

49310,332

1.67

1711,407

4755,956

1.52




1651,126

1,30210,251

1.15

117608

7154,260

1.15

2001,335

1,18410,457

1.32

113716

7134,330

0.96

2121,473

1,25110,866

1.25

135799

6084,423

1.23




62218,609

3,211354,269

3.69

72818,757

3,282324,585

3.84

67420,559

2,915355,556

4.00

72820,733

3,004325,555

3.81

75221,493

2,978359,098

4.22

84921,930

2,937328,495

4.33

Appendix L

112

Documents

Responding to the Challenge of Diabetes in Canada · prevalence and other diabetes information. The National Diabetes Surveillance System (NDSS) is the mechanism developed to provide