Presenter Disclosure Information• Moira Kapral

• Challenges and Opportunities in Linking Administrative Claims Data with Stroke Registry Data

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Challenges and opportunities in linking administrative claims data with registry data: the Registry of the Canadian Stroke Network

Moira K. Kapral MD, MSc, FRCPCMoira K. Kapral MD, MSc, FRCPCMay 2010May 2010

Overview

• Description of the Registry of the Canadian Stroke Network (RCSN)

• Administrative databases available for linkage

• Linkage process

• Advantages and disadvantages of linking registry to administrative data

Ontario, Canada

• Canada's largest province

• Population 13 million

• Urban and rural

• Ethnically diverse

• Universal health coverage with single payer

Ontario Stroke System

• Regionalized stroke care

• Designated stroke centres

• Transfer and bypass protocols

• Funded by Ministry of Health

• Part of a nationwide stroke strategy

• Requirement for measurement of monitoring of the quality of stroke care delivery

Evaluation of the provincial stroke strategy

• Mandate for reporting regional performance on key stroke quality indicators

• 23 indicators including

– Thrombolysis

– Neuroimaging

– Stroke unit care

– Carotid imaging

– Antithrombotic therapy

– Risk factor modification

• Need for high-quality clinical database

Registry of the Canadian Stroke Network

• Clinical database founded in 2001

• Patients with acute stroke or transient ischemic attack admitted to hospital or seen in the ED of acute care institutions

• Four phases with varying methodology

• Funded by the Canadian Stroke Network

and the Ontario Ministry of Health

and Long-Term Care

• www.rcsn.org

Registry of the CSN

Emergency Emergency Department Department

DataData

Discharge Discharge

DataData

Administrative DataAdministrative Data-Hospitalizations-Hospitalizations-Mortality-Mortality-Physician Services-Physician Services-Provincial Drug Formulary-Provincial Drug Formulary

Core Database

Entry Criteria:• ED diagnosis of stroke/TIA

• onset 2 weeks of hospital visit

EMSEMS

DataData

Hospital Hospital AdmissionAdmission

DataData

Data collected

• Demographics

• Pre-hospital/EMS and emergency department care

• Stroke data – type, subtype, severity, scales

• In-hospital interventions, consultations, complications

• Medications – prehospital, during admission, at discharge

• Investigations

• Disposition

Methodology

• laptop computer with custom software for data entry

• electronic transfer of data to coordinating centre

• web-based module also in use (SPIRIT)

Intelligent Data Entry Improves Data Quality• only appropriate fields appear (if … then “pop-ups”)

• few text fields (check boxes or choice fields)

• range checks

• logic checks – e.g. only correct sequence allowed

• data completeness checks

• double entry of critical fields

• display of time intervals, age for reality checks

Characteristics of a high quality clinical database

completeness of recruitment

completeness of data

use of explicit definitions of variables

data validation

Black N, Barker M and Payne M. BMJ  328:1478, 2004

Data Transfer

Institute for Clinical Evaluative Sciences (ICES)

• Established by provincial government to perform research related to equity, access and quality of health care

• Administrative data housed there by special agreement

• Strict data security measures

RCSN phases 1 and 2: 2001-2003

• 21 stroke centres across Canada

• Consent-based with 6-month follow-up interviews for functional status and quality of life

• Problems with consent led to biased sample

RCSN “Prescribed” in PHIPA 2004

• The RCSN is one of only four registries in Ontario that have been granted 'prescription' in the regulations of the Ministry of Health and Long-Term Care under s.39(1)(c )of the Personal Health Information Privacy Act 2004.

• RCSN collects data without consent, “for the purposes of facilitating or improving the provision of health care”

• RCSN is the primary means of monitoring and evaluating acute stroke care and outcomes in Ontario

RCSN Phase 3: 2003 onwards

• Data collected without consent, “for the purposes of facilitating or improving the provision of health care”

• All patients at 11 Ontario stroke centres (core RCSN)

– N > 40,000

• Population-based audit (RCSN Ontario Stroke Audit)– 15-20% of all Ontario stroke cases at all 150

hospitals (n~5,000/year)

• Patients at secondary prevention clinics

Clinics

Stroke centers

Province-wide

audit

Data Security

• laptop computers use finger print readers for password protection

• data encrypted using BestCrypt ® software

• personal patient information stripped before data sent to ICES (encrypted health card number sent separately)

• encrypted data uploaded to ICES by direct unpublished telephone line

• data kept on a secure server without connections to Internet or Intranet

• ICES has physical security barriers

• data security and privacy policies

www.ices.on.ca Investigative Reports

Marked variations in tPA by hospital type, 2002/03 and 2004/05

Regional variation in stroke unit admissionsOverall rate 18.4%

Publications

Why link registry to administrative data?

Rationale for linkage to administrative data

RCSNstroke cohort

Follow up for readmissions, medications, deaths

Characterize based on

geographic and area factors

Pre-stroke conditions, care, drugs

Advantages of linked registry and administrative data

• Registry creates well-characterized cohort of stroke patients, with detailed baseline clinical data

• Long-term follow up through administrative data

– Less expensive than clinical follow up

– Minimal loss to follow up

• For evaluation of stroke systems and regionalized care, permits evaluation of association between interventions and outcomes (mortality, readmissions, patterns of care)

Database Variables

Registered Persons/Vital Statistics

Mortality

CIHI Discharge Abstract DB Hospital separations

CIHI National Ambulatory Care

Emergency department and ambulatory visits

Drug Benefits Database Prescription claims for those aged > 65

Canada Census Area-level income, education

Physician Claims Outpatient visits, procedures

Population-based, comprehensive, validated

Administrative data sources in Ontario

Process for linkages

• Need unique patient identifier: health card number

• Considered most sensitive piece of personal health information – need stringent data security procedures

• Health card number collected in RCSN database

• Not transferred with other data; sent on separate disc to specific data custodian at ICES

• Scrambled to create a new unique ID number; kept on a separate server with no connection to Internet in an area with restricted access

Challenges in using linked data

• Collection of unique patient identifier necessitates stringent, time-consuming and expensive data security measures

– Development of protocols and procedures

– Personnel to implement

– Programming and software

– Security of data facility

• Cannot export or share linked dataset

Challenges in using administrative data

• Population-based data sources not always available

• Not all variables of interest available in existing databases

– Functional status, quality of life, laboratory data, biomarkers, genetic tests

• Coding/miscoding

• Claims may not reflect reality

• Experience required for proper use and interpretation

Conclusions

• Linked registry and administrative data ideal for studying both processes and outcomes of stroke care

• Should be considered for jurisdictions that are establishing regionalized systems of stroke care, to allow evaluation of return on investment

• Main challenges are

– Availability of appropriate databases

– Data security

– Expertise in linkages and analyses

• Worthwhile investment for policy-makers and government

Advertisement for RCSN database

• AVAILABLE TO YOU for research projects

• Analyses done on-site at ICES and funded by RCSN grant

• Need to collaborate with RCSN investigator

• Project request forms available at www.rcsn.org

Thanks and questions