CARRFS eNews Winter 2014

CARRFS eNews Volume 4, Issue 1, Winter 2014

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Canadian Alliance for Regional Risk Factor Surveillance - Quarterly eNewsletter

CARRFS InterviewEthics in DataDriven Health Dr. Howard Hu

Dean, University of Toronto

CARRFS ProfileDr. Drona Rasali

Director, Population Health Surveillance and Epidemiology BC’s Provincial Health Service

Authority

CARRFS Feature

Reality Mining

Big Data and TheFuture of Risk Factor

Surveillance


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Reality Mining: Big Data and The Future of Risk Factor Surveillance5 CARRFS eNews examines how “big data” could transform public health and risk factor surveillance in Canada. By PAUL WEBSTER

CARRFS Interview 9 Dr. Howard Hu, Dean, Dalla Lana School of Public Health, University of Toronto looks at ethical issues related to big data. By JOSTEIN ALGROY

Surveillance Facts 14 Dr. Bernard Choi, Public Health Agency of Canada. Part V of his series about the Evolution of Public Health Surveillance. By BERNARD CHOI

WARFS: Global Conference in Beijing 15 Highlights from the World Alliance for Risk Factor Surveillance 2013 Global Conference in Beijing, China. By BERNARD CHOI

CARRFS Profile 19 The CARRFS Member Profile: Dr. Drona Rasali, Director, British Columbia Provincial Health Service Authority. By JOSTEIN ALGROY

Table of ContentsFrom the Editor ................................................................................. page 3News & Trends .................................................................................. page 4Reality Mining .................................................................................... page 5CARRFS Interview: Dr. Howard Hu ..................................... page 9Individualized Behaviour Surveillance ................................... page 13Surveillance Facts ............................................................................. page 14WARFS Beijing Global Conference ....................................... page 15Chair’s Message ................................................................................. page 18CARRFS Profile ................................................................................ page 19Updates from Working Groups .............................................. page 21Hello & Goodbye ............................................................................ page 22

CONTRIBUTORS

Jostein Algroy, Editor in ChiefXiaoyan Guo, Copy EditorPaul Webster, Health Science WriterDr. Bernard Choi, Science WriterMary Lou Decou, Senior WriterAhalya Mahendra, CARRFS Working Group Chair

PAN-CANADIAN EDITORIAL ADVISORY BOARD

Jostein Algroy, Editor in ChiefPaul Webster, Health Science WriterAnne Simard, Chief Public Affairs Officer, Public Health OntarioMary Lou Decou, Epidemiologist, Public Health Agency of CanadaDr. Bernard Choi, Senior Research Scientist, Public Health Agency of CanadaDr. Elizabeth Rael, Senior Epidemiologist, Ontario Ministry of Health and Long-Term CareLarry Svenson, Director, Alberta Ministry of HealthDr. Drona Rasali, Director, British Columbia Provincial Health Services Authority

More members to be added to the Board later.

SECRETARIAT SUPPORT

Public Health Agency of CanadaMary Lou Decou

PUBLICATION

CARRFS eNews is a Quarterly Newsletter for the Canadian Alliance for Regional Risk Factor Surveillance (CARRFS) and is published in Winter, Spring, Summer, and Fall.

Photo Credits:Cover Photo: iStockPhoto_000002360434 - Tonis PanPhoto page 5: iStockPhoto_000024499461 - Tee_Photolive

Disclaimer: CARRFS is a pan-Canadian network of public stakeholders across Canada, working together to enhance the capacity of Regional Risk Factor Surveillance in Canada. CARRFS is supported by the Public Health Agency of Canada (PHAC). The content in the CARRFS eNews does not necessarily reflect the official view of PHAC, Health Canada, the Government of Canada or the employer of its contributors.

CARRFS WEBSITE URL: WWW.CARRFS.ORG

CONTENTS in this Issue...

http://WWW.CARRFS.ORG

http://WWW.CARRFS.ORG


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From the EditorAs CARRFS eNews evolves to deliver better insights and to serve the Canadian risk factor surveillance community better, we’re focusing on key themes in public health. In this issue, we look at “big data”.

Big data – it’s a hot buzz phrase these days. But what is big data, and how could it impact on public health and risk factor surveillance? CARRFS

eNews writer Paul Webster took a closer look. Big data, he reveals, is not only about collecting more data from disparate, novel sources such as consumer loyalty cards, genomics, and GPS systems. It’s also about integrating already-existing data that remains isolated. Better integrated, more accurate data will enable what MIT data theorist Alex Pentland describes as “Reality Mining”. By that he means sophisticated ways to map how people actually behave that generates a holistic understanding of health. As Wendy Gerrie, director of Integrated Decision Support Services at Hamilton Health Science Center, in Hamilton, Ontario, describes it, the era of “total patient data” is emerging. Not everyone is happy with this development. Dr. Diane Finegood, President and CEO at the Michael Smith Foundation for Health Research, and Professor in the Department of Biomedical Physiology and Kinesiology at Simon Fraser University in Vancouver, worries that data revealing peoples’ real-time behaviour might not be more accurate than data from self-reporting surveys. Relying too much on big data could lead us into a reductionist pursuit of causes of diseases – just because we have the data. Which might not provide any better solutions. Dr. Howard Hu, Dean, Dalla Lana School of Public Health, University of Toronto looks quite positively towards better data integration. In an

interview about ethical issues relating to big data, he stresses that transparency, privacy and community involvement are paramount concerns. In this issue of CARRFS eNews, we’ve incorporated a new section called News & Trends written by Dr. Bernard Choi. We’d like to extend this to also include stories from around the world in upcoming issues. Enjoy!

Jostein AlgroyEditor in Chief

Volunteers for CARRFS eNewsCARRFS eNews needs volunteers to help with specific sections of the newsletter. We need reviewers who would like to review “Epi” reports and share the information with the network. We are looking for a person who can write up a few blurbs about News & Trends taking place in the “Epi” community – nationally and internationally. If you are interested please contact [email protected].

Send us your StoryWe urge all members of CARRFS to send us articles and ideas for upcoming issues. Please submit your story to [email protected].

mailto:[email protected]





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New

s & T

rends Publication of the CARRFS Think

Tank Forum PaperA scientific journal paper documenting the experience of the 2008 Think Tank Forum – which led to the creation of the Canadian Alliance of Regional Risk Factor Surveillance (CARRFS) – has just been published in the Archives of Public Health. The title of the paper is “Enhancing capacity for risk factor surveillance at the regional/local level: a follow-up review of the findings of the Canadian Think Tank Forum after 4 years”. Authors include 18 CARRFS members from universities (2), and federal (4), provincial/territorial (6), and local (6) governments and agencies. The paper concludes that recommendations of the 2008 Think Tank Forum are useful for continuing to build surveillance capacity - in Canada as well as globally. <>

Publication of the WARFS White Paper In 2009 the World Alliance for Risk Factor Surveillance (WARFS) developed a white paper to discuss the theory, method and use of risk factor surveillance. At the 2013 WARFS Global Conference in Beijing, China, a plenary panel session discussed the draft. A decision was made to finalize the WARFS white paper, based on inputs from the discussion, for publication as a scientific journal paper. Canada is a member of the writing team that will finalize the paper. <>

Development of the AMNET Lessons Learned PaperCreated in 2003, the Americas’ Network for Chronic Disease Surveillance (AMNET) is celebrating its 10th anniversary. At the 2013 AMNET Technical Conference in Ibarra, Ecuador, the AMNET Board of Directors decided to develop a scientific paper for the Pan American Journal of Public Health. The paper will review the major milestones in the past 10 years, summarize lessons learned, and point out future directions. Canada has been invited to lead the writing team to develop the lessons learned paper. <>

By B

erna

rd C

hoi

http://www.archpublichealth.com/content/72/1/2









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Reality Mining

Big Data and The Future of

Risk Factor Surveillance

CARRFS Feature...


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Reality MiningBig Data and The Future of Risk Factor SurveillanceHealth science writer Paul Webster looks at Big Data and how it is transforming public health and risk factor surveillance in Canada.

It’s known as “big data”. And it’s generating a lot of buzz in public health surveillance circles. Supercharged by the convergence of myriad data streams from mobile devices, biosensors, genomics, electronic health records and population health databases, digital risk factor surveillance data verges on becoming both all-encompassing, and all-accessible. As the big data revolution sweeps through healthcare, big possibilities for epidemiology and public health surveillance are now swinging open. Alex Pentland, an MIT data theorist, discussed some of those possibilities at the World Innovation Summit for Health, in Doha, Qatar, late last year. “By combining fine-grained, ubiquitous monitoring of human behavior with standard medical data and standard genomic data,” Pentland said in a report tabled at the Summit, “we are taking the first steps towards generating a new, holistic understanding of disease and disease processes.” Through a process of data sifting he calls "reality mining" which reveals how people behave far more accurately than survey data does, Pentland argues, big data will hugely enhance chronic disease surveillance, as well as treatment. Eric Topol, Chair of Innovative Medicine at the Scripps Research Institute in La Jolla, California, agrees. “We have this phenomenal data infrastructure, with the bandwidth and the connectivity and cloud computing and mobile devices,” he notes. Put all this technology together with the many new data streams that Pentland describes, and big data opens spectacular possibilities. “Let’s say you define someone genomically – along with their family history – as very high risk for asthma. We know a lot of kids die of asthma. At the same time, you have sensors to pick up signs that their airways are starting to constrict long before they even have a wheeze.” Help, Topol hardly needs to add, could be on its way before an asthma attack starts. >>CA

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FS F

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CARRFS Feature... Futuristic as this vision of data-driven healthcare seems, localized versions of it can already be seen forming in parts of Canada. Driven by computing advances, data specialists are dusting off reams of disparate and disconnected data, integrating it with new sources of so-called “big data” from genomics, and harnessing it to probe numerous themes – including risk factors for disease. In Hamilton, Ontario, for example, a system known as the Integrated Decision Support Business Intelligence Solution (IDS) now links patient information including demographics, clinical characterizations, emergency visits, hospital admissions and discharges. The system can also reach beyond healthcare databases to potentially connect with information from social services, and possibly even law enforcement agencies. Currently operated by the Hamilton Niagara Haldimand Brant Local Health Integration Network, this system is being adopted by three further local hospital networks serving about five million people across southern Ontario. “The data we’re integrating

is much more than just different types of hospital information,” explains Wendy Gerrie, who led the system’s development as director of Integrated Decision Support Services at Hamilton Health Sciences Centre. “We’re bringing in-house data, for example, because we’ve identified that as an issue

relevant to healthcare.” As Gerrie enthused at a recent data analytics conference in Toronto, “total patient data capture is emerging.” Karen Tu, who assembled the Electronic Medical Record Administrative data Linked Database (EMRALD), at the Institute for Clinical and Evaluative Studies (ICES), in Toronto, is similarly enthusiastic. Health

surveillance, she believes, is poised for “a great leap forward.” By linking data from 300,000 patient EMRs with data from the Canadian Institute for Health Information hospitalization database, the Ontario Drug Benefit database, the Ontario Health Insurance Plan physician billing database, and the Registry of Persons database, Tu can compile patient health histories that are more comprehensive than ever seen before in Ontario – revealing insights into risk >>

“Health surveillance is

poised for “a great leap forward.”

ElectronicMedical Records

BehaviouralData

Public HealthData

GenomicData

BIG DATA ANALYTICSPLATFORM

EVIDENCE+ INSIGHTS

LOWERCOSTS

BETTER OUTCOME

SMARTERDECISIONS

=

OVERALL GOALS OF BIG DATA IN HEALTHCARE


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CARRFS Feature (cont’d)factors such as the quality of care for diabetes and ischemic heart disease, and the prevalence of obesity in children. Tu’s data reach is impressive. But many big data projects dwarf it. A recent assessment of heart drugs conducted within a distributed network of electronic healthcare databases created as part of the Mini-Sentinel program, funded by the US Food and Drug Administration, for example, drew from a source population of more than 100 million people and 350 million person-years of observation time. It yielded risk estimates that were much more precise than those from prior studies. Walter Wodchis, leader of the Health System Performance Research Network at ICES, says big data – which started with linking up data from acute care, emergency, inpatient rehabilitation, complex continuing care, long term care, home care, physician, pharmacy, labs and assistive devices – is now moving towards linking data on people’s social circumstances; housing; food security; income security. Meanwhile, as part of a study of 225,000 people in Ontario, the province is developing databanks of biological specimens from individuals that can be used to track long term health outcomes by linking-up genetic and blood profiles with long run health care events. Seen as a whole, the potential for risk factor surveillance seems impressive. Not everyone so fervently believes in big data’s potential, however. “While the volume of data will grow and when various sources are merged, we will be able to generate new hypotheses,” warns Dianne Finegood, President & CEO of the Michael Smith Foundation for Health Research, in Vancouver, “I am not sure this will help all that much with surveillance.”

The problem, Finegood explains, is that much of the digital data on people’s behaviour may prove unreliable. To illustrate her point, Finegood points to potential new sources of nutrition data from mobile devices such as smartphones or movement tracking devices. “You can probably track people entering fast food restaurants,” Finegood argues, “but you can’t

determine what they actually eat. So if it depends on people reporting their own consumption it will suffer from the same inaccuracies of self-reporting we currently experience. Even if this was merged with purchase data, people often purchase for more than one person and again it does not say what people actually eat.” More broadly, Finegood worries that the notion that big data will help us unravel the complexities of the drivers of non-communicable diseases may be fundamentally flawed.

In Finegood’s assessment, it’s “a highly reductionist perspective” to think that causes of diseases must be established before we will know what the solutions are. “There are solutions appropriate for complex problems,” she notes, “which don't depend on working out all the causes.” At the BC Center for Disease Control, director of public health analytics Laura MacDougall cautions that much of the work being done to integrate datasets in Canada remains outside the realm of big data. But the integration of genomic data with existing health data is a looming reality, she notes. And so too is the integration of consumer data from sources such as loyalty cards. “Data is the bread and butter of public health,” MacDougall stresses. “The big data movement highlights just how much new data is out there. We need to start positioning ourselves so that we have the ability to use it.” <>

“The problem is that much of the digital data on

people’s behaviour may prove unreliable.”


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CARRFS Interview...

Ethics in Data Driven

Health Dr. Howard

Hu, Dean,

University of Toronto


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CARRFS Interview...From an ethical standpoint, what are the critical issues in using the Canadian Community Health Survey (CCHS) as the primary source for public health policy making? And how do we best compensate for the deficiencies that are embedded in their methodology and data? Like any major source of data that is population-wide, there are limitations. My view, as a population epidemiologist and as a dean of a public health school, is that the advantages of having access to sources of data like CCHS continues to out-weigh the limitations and deficiencies. But, every single statement of an insight made possible by the data has to be accompanied by a very well-informed statement of what the limitations are. Nuances that are often excluded in this “sound bite” age can never be neglected by the public health professionals who are using this data and trying to communicate the findings to the public. I think there are ways to enrich the understanding of what these databases mean by bringing in other sources of data to validate insights discovered using the original database. Speaking from this school, we have a certain expertise in critical qualitative research. The questions that are posed need to be examined very closely in relation to the information that is available in a database like this. Even without looking at the results, there are limitations to the questions that are being posed that need to be interpreted. Part of that is to define what questions are necessary but cannot be examined using the database that is available to us in order to fully understand what we know about health risks. It is sort of like the cartoon of a researcher looking only where the street lamp shines its light – because that is where the light is. But the dark area has lots of meaning in terms of mapping reality. Because the light is not there, you are not going to get any information. As we move towards a data-driven health care system, the accumulation of data has some profound ethical consequences. How far do you think we can go in this

direction without overstepping ethical issues related to privacy and the infringement of individual rights? There are at least two critical elements here to actually securing the support of the community. One of them is an informed community. We need to make sure that the data that is being gathered, the questions that are being addressed and the security of the collected data is

communicated, in every form possible, allowing the contributors of the data to understand that their contributions are going towards a major effort to improve health, risk factors for health, and/or predictors of health. The second is community participation in the posed questions, the utilization of the information, and the purpose. The linkage to the policy questions that are being posed such as “should we put resources here or there or should we be eliminating public exposure to x, y or z” has to be clear from the outset. It is very important that the community understands why we are doing the research and not simply what the research is, and what the questions are. Even with that information and with that degree of community participation there always has to be a choice element so that people can participate or not. I think the grey zone is with respect to the passive generation of data that is in the public domain. With the universal

health access system in Canada and the ability to passively collect all the data that relates to people’s utilization of the health system and use of prescriptions etc., there is an element of passive data collection that, arguably (if it is fully anonymous), it would be counter-productive to require every citizen to go through additional steps of informed consent to allow us to use the data. The other extreme, – i.e. the collection of data that is for research only such as biological samples for research or information collected about health care utilization and preventative maintenance of health services that is only for research – will obviously require informed consent. The grey zone is where there is information that is being generated that is neither obviously relevant to health >>

“Having a “body” that involves substantial

community participation, like an

ethical review committee, to ponder the questions in the grey zone and to provide guidance

would be the process in which we can utilize

the data and make decisions properly.”


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CARRFS Interview (cont’d)care or for research. This requires careful considerations. Having a “body” that involves substantial community participation, like an ethical review committee, to ponder the questions in the grey zone and to provide guidance would be the process in which we can utilize the data and make decisions properly.

Public Health has become increasingly complex and has a strong need to collect data – not only within but also outside the health sector. In a fiscally constrained environment, how do health professionals deal with this issue? And what solutions do you see? The irony is that as the big data enterprise [becomes] more sophisticated, merging health data with non-health data has become cheap. But big data has let us realize that we know very little about the environmental, [and] nutritional determinants of many chronic diseases. We do know that for many chronic diseases the proportion of the disease causation that is due to non-genetic environmental nutritional factors is huge. A lot of this has been generated from studies that have emerged in the past 20 years involving large databases of twins, because twins – based on their genetic identity for identical and fraternal twins – actually give us a population of individuals that, followed over time, allow us to quantitatively estimate what proportions of a disease that arises are genetic and what are non-genetic. With these insights, we have generated a lot of urgency in re-doubling our effort to identify what the upstream non-genetic risk factors are, so we can be better at prevention. This will necessarily involve bringing into these databases data on occupation, geography, air pollution, water pollution exposures, and lifestyle factors that go beyond what the usual health system has typically generated. I will have to say that I am an enthusiastic supporter of that form of big data epidemiology. It does mean that one needs to pay attention to the privacy community involvement, and [the] community participation that was discussed above.

Will this development expand the role of epidemiologists?

In my point of view – not only as an academic administrator, but also as a researcher – this is the fun part. I think multi-disciplinary and trans-disciplinary is the exciting part of public health science and epidemiology because we get to dabble with many issues and deal with experts in many different disciplines. We are the “circus masters” bringing together these different forms of data and experts in an integrated harmonized format so we can actually see patterns and help identify issues that ultimately will improve public health.

As the head of a public health school, how do you prepare the new generation of epidemiologists / health professionals for the new environment? One of the teaching philosophies that we are promoting in the school is the appreciation of how the explosion of data and knowledge has made it impossible for us to simply teach knowledge as the foundation from which people actually build their career or understand the questions to pursue. We have a much more heavy emphasis on the [societal] problems – the unsolved public health problems by bringing them into the classroom as a generators for the questions and the source on which the methodology and the approach to these problems can be studied – including integration of

different disciplines of knowledge which they have to understand and learn – the competencies if you will. It is up to the students to know where to get the information and to bring that into the problem solving process – how they are going to approach the problem, who to bring in to collaborate on solving the problem? I think this is the kind of approach that is necessary for the 21st century of public health because it teaches, essentially, the process of how to approach problems – the foundation in which you know what kinds of information you need to get. And tapping into that information is what the world has brought us with the information revolution. But it is what you do at first – how you approach a problem, how you model it, how you think about it – that is what we really teach. Big data is [a] tool somewhere in that process. >>

“I think multi-disciplinary and trans-

disciplinary is the exciting part of public

health science and epidemiology because we get to dabble with many issues and deal with experts in many different disciplines.”


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CARRFS Interview (cont’d) How do you teach the students to maneuver in the ethics of generating health data? Luckily we have very close relationships with a unique entity here at the University of Toronto – the Joint Centre for Bioethics. The Centre began as a multi-disciplinary institution that helped health care institutions to build their ethical review boards and grappled with very thorny questions on how to do research in clinical environments. But over time, it has embraced big public health research questions, global health research questions – things that cross boundaries with transnational issues, cultural issues between institutions and countries. It has become the source of many of our scholars who teach our students about fundamental approaches to understanding the ethical issues that unfold from research and how to approach them. Those are fundamental tenets for our students and hopefully they also become the communicators of some of those methodologies in their work.

From a measure-centric reductionist perspective in epidemiology, we often believe that the solutions could arrive from reversing the causes to the problems. What would be the right approach for decision/policy makers to avoid falling into this logical trap? My personal view is that it is lovely to be in the information age but, like any kind of research, initial findings have to be validated. An initial finding based on observational studies runs the risk of generating conclusions that are not supported when using randomized trials. Those are the kinds of discrepancies and inconsistencies that really shake the public faith in headlines that they read about the next new study that comes out. And rightfully so! I think that the public is hungry for good information and good advice. The job of our senior statesmen in public health is to provide the right level of interpretation and caution of the new results that come out. One thing is certain, when there is a critical mass of evidence – whether it is experimental or observational or randomized trails [with] multiple-validated observations in multiple-diverse populations – that the policy recommendations should have weight, and make a difference.

Just this week, one of our global health experts, Dr. Prabhat Jha, has published in The New England Journal of Medicine a superb article that reviews the effect of taxation policy on tobacco’s impact on mortality and morbidity. There is no doubt that taxation policy has a huge impact

on tobacco related deaths. This is a policy tool that is underutilized and should be utilized a lot. Whether that will someday be followed by a sugar tax or something like that, we don’t quite know yet. These things take time to fully shape into what should be supported by population-based policy. Again, limitations also deserve to be part of the picture. Even if we end up with a sugar taxation policy or something, we always have to acknowledge that there are segments of the population that don’t really need it – that will suffer an unnecessary burden because in fact their metabolisms are less prone to sugar-induced obesity. These are societal costs that have to be accepted, like any policy measures that are good for society and that sometimes outweigh

some of the minor discomforts from some segments of the society that don’t need it. <>

By Jostein Algroy

“There is no doubt that taxation policy has huge impact on

tobacco related deaths. This is a policy tool that is underutilized and

should be utilized a lot.”


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IndividualizedBehaviour Surveillance Today we see fashion items such as wristbands, smartphones, and wearable computers as new status symbol tracking human movements – including sleeping patterns. The IT industr y has made it fashionable to track your vital “health” behaviour data – data that can be aggregated into vast data pools that, with smart algorithms, can reveal health-related behaviour. It’s a far cr y from the tradiotional sur vey approach. Dr. Howard Hu explores potential dangers and benefits.

I don’t have a scholarly response to this. I think the use of the term “fashionable” aptly describes a trend that has not been examined in a systematic way. My own gut response is that there is a certain element of obsessive compulsiveness and/or narcissism to it – because we are all curious about what we can learn about ourselves. It is not clear to me whether the information ultimately is useful and it is certainly not collected in a systematic way. Like anything else involving the IT industry, there is a leading group of people who are probably not representative of the general population who are generating this kind of information. But at the same time, I think that it is also part of the future. We will see lots of passive technologies where you don’t have to press a button, you don’t have to program anything – the device will collect the information about you and you have to actively stop it from collecting information if you don’t want the information. That is, kind of, the future. Whether or not it turns into tools that are useful for public health research or for

personalized medicine, or for personalized health behaviour adjustments, is left to be seen. I’d like to see an early scholarly approach to this so that the public has some insights into how useful it might be – what the actual utility might be. I am aware of some scholars who are interested in this area. One of the early initiatives has been to look at Internet-seeking behaviour and to look at how Google searches can be used to map population-wide early epidemics – earlier than what the laboratories can see – using the geography of the internet-seeking behaviour to physically map some of the disease trends in the community. With all the new smartphone apps that have been developed, [this] goes much further than what you type into the computer. It will be very interesting to see what evolves in the future. <>


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Surveillance Facts...Part V in a series about the Past, Present and Future of Public Health Surveillance. Written by Dr. Bernard Choi, Senior Research Scientist, Chronic Disease Surveillance, Public Health Agency of Canada and CARRFS eNews science writer.

PastA contemporary of John Graunt, Sir William Petty, in his 1687 essay on “Mankind and political arithmetic”, termed the science of Graunt “Political Arithmetic”. This term is a good description for today’s public health surveillance, which requires arithmetic skills for analysis of data and a keen political sense for interpretation of results.

The practice of epidemic field investigation began with the personal diary of Samuel Pepys (1633–1703), which he kept from 1660 until 1669. His diary is an important primary source of data and a first-hand account for London, with personal revelations and eyewitness reports of many great events. During the “Great Plague of London” in 1665, for example, Pepys’ diary made almost daily reference to the epidemic. Not using the modern terminology, he actually introduced the concept of proportionate mortality, or the proportion of total deaths resulting from the index disease. The numbers recorded by Pepys from the beginning of June to the end of November indicate the effectiveness of the natural intervention, that is, the coming of the November frosts and the winter. The plague ended with the “Great Fire of London” in 1666 that destroyed and cleansed the overcrowded neighbourhoods.

PresentInformation Products/Dissemination – The final stage in the public health surveillance process – the timely communication of information to users – is important for follow-up action. Users of surveillance are those who need to know for program planning and decision-making purposes. They include public health practitioners, health planners, epidemiologists, researchers, and policy-makers as well as members of the public and the media. In addition, recipients should include those who provide reports and those who collect the data. Public health decision making depends on three types of knowledge (surveillance, scientific research, and lay experience). Dissemination may involve the use

of a variety of communication vehicles such as formal surveillance reports or bulletins, annual reports, teleconferences with partners, media conferences, media releases, and public advisories. Evaluation of Surveillance Systems – Every surveillance system should be evaluated periodically to ensure that it is serving a useful public health function and is meeting its objectives. Several guidelines have been proposed for the evaluation of surveillance systems. A systematic evaluation should address the following six aspects: (1) importance, (2) objectives and components, (3) usefulness, (4) cost, (5) data quality (accuracy, representativeness and completeness), and (6) quality of surveillance systems (simplicity, flexibility, portability, stability, acceptability, sensitivity, predictive value positive, representativeness, and timeliness). Data and system architecture of a surveillance system should follow four design principles: automated, real-time, routinely useful, and locally useful.

FutureImproving Methods of Data Collection – A number of methodological research areas to improve data collection in the 21st century have been suggested such as a systematic process for indicator selection; methodology to convert results from different health surveys with different indicator definitions to a standard and compatible level; methodology to increase survey response rates by population subgroups; methodology to collect proxy indicators; incorporation of laboratory data in routine population health surveillance; development of automatic, laboratory-based, and electronic reporting of diseases. Improving Methods of Epidemiologic and Statistical Analysis – A renewed activity associated with public health surveillance is that of the methods of epidemiologic and statistical analysis. Since the 1980s, applications and methods of time series methods have enabled more meaningful analysis and interpretation of data collected from surveillance. More sophisticated techniques such as geographical and spatial methods and space-time monitoring will continue to be applied to public health surveillance as they are developed. <>


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Risk Factor Surveillance A Global Perspective . . .Dr. Bernard Choi, Public Health Agency of Canada, gives some highlights from the World Alliance for Risk Factor Surveillance (WARFS) 2013 Global Conference, October 29 - November 1, 2013, Beijing, China.

The World Alliance for Risk Factor Surveillance (WARFS) 2013 Global Conference was held from October 29 to November 1, 2013 in Beijing, China. WARFS is the Global Working Group on surveillance of the International Union for Health Promotion and Education (IUHPE). The 2013 Global Conference was co-hosted by the Chinese Center for Disease Control and Prevention (CCDC) and the Chinese Preventive Medicine Association (CPMA). With more than 200 participants from 16 countries, the WARFS Beijing Conference was one of the best-attended WARFS conferences since inception in 1999 in Atlanta, USA. The theme of the 2013 global conference was the past, present and future of risk factor surveillance. Two members of CARRFS, Bernard Choi and Sue Bondy, were invited speakers and chairs of plenary sessions at the conference. >>


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WARFS Global Conference (cont’d)

Day 1 of the 3-day conference focused on learning from the past. It started with welcome addresses from IUHPE, WARFS, CCDC, CPMA, and the National Health and Family Planning Commission (NHFPC) of China. This was followed by 4 keynote addresses from USA (global progress since the first global conference in 1999), Canada (lessons learned from the history of surveillance for the future), World Health Organization (WHO) (WHO global monitoring framework for noncommunicable diseases (NCDs)), and China (history, current state and future of NCD surveillance in China). There were also five plenary sessions discussing the difficulties for developing global risk factor surveillance, global challenges to NCD risk factor surveillance, meeting the WHO 25% reduction target of premature NCD mortality by 2025, country strategies in China, Singapore, Venezuela, Canada and USA to meet surveillance needs, and the IUHPE WARFS white paper on surveillance and health promotion. Day 2 focused on reflecting on the present. This included present methodological challenges for surveillance, such as survey methodology, other challenges, surveillance evaluation, and surveillance information dissemination. A plenary session discussed surveillance use in China, Canada and Venezuela. Four parallel sessions (3 English and 1 Chinese) featured 44 oral presentations and 21 poster presentations from Antigua & Barbuda, Australia, Cambodia, Canada, China, Finland, Georgia, Hong Kong China, Italy, Kenya, Singapore, South Korea, Thailand and Venezuela. Day 3 focused on planning for the future. Three plenary sessions discussed problems and solutions for the future, ways to encourage future global collaborations, and future development of global risk factor surveillance. During the 3 days of the conference, a number of major questions in risk factor surveillance were presented and discussed:

1: What progress in risk factor surveillance has been made in the last decade?2: Based on historical developments, what will the future look like?3: What are the global challenges to meeting World Health Organization's NCD surveillance needs, and what innovative approaches could be used?4: What are the methodological challenges for risk factor surveillance?5: Why have so many countries experienced difficulties in developing a real NCD surveillance system?6: What are the potential solutions? The 2013 global conference made significant contributions to global NCD risk factor surveillance on several fronts. It opened up conceptual thinking about risk factor surveillance: in time, by going back to the past to learn lessons for the future; in space, by exchanging experiences from developed and developing countries; and in content, by blending theory and practice. Outcomes of discussion and debates at the conference provided important leads to revise and finalise the IUHPE WARFS white paper. Comments from participants include: "I enjoyed every moment of the conference", "Very informative, thought-provoking and inspiring presentations", "I thoroughly enjoyed the conference and felt very happy to be with like-minded people", "The conference was really exciting and the sessions were very useful". The WARFS Global Conference is held every two years. The 2015 conference is scheduled to be held in Antigua & Barbuda. <>

By Bernard Choi


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Announcement

Canadian Alliance for Regional Risk Factor Surveillance

CARRFS 3rd National Event an e-Forum 28th to 29th April 2014

Connecting Chronic Disease Outcomes and Surveillance with Interprofessional Collaborative Practice and Interprofessional Education

Call For AbstractFebruary 15, 2014 - March 15, 2014

Keynote SpeakersBarbara F. Brandt, PhD (Director, National Center for Inter-professional Practice and Education, Associate Vice President for Education, University of Minnesota, Academic Health Center).

John H.V. Gilbert, C.M., Ph.D., FCAHS (Principal & Professor Emeritus,College of Health Disciplines, University of British Columbia. Co-Chair, Canadian Inter-professional Health Collaborative).


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Chair’s MessageBetty Reid-White, Chair for the Canadian Coordination Committee, (CCC) gives a status update on CARRFS achievements over last quarter and what is in store for CARRFS over the months ahead.It is indeed an honor for me to have been named as chair for the Canadian Coordinating Committee (CCC) and to have been chosen to lead the work of this organization forward. My previous involvement with the Training Working Group has provided me the opportunity to volunteer with CARRFS and become part of a national network of professionals who strive to build and strengthen the capacity for regional/ local risk factor surveillance in Canada.

We are now nearing the end of year two of our three-year strategic plan. While a lot has been accomplished, there is still much to be achieved. With the support of the Public Health Agency of Canada and the many volunteers who are part of our working groups, I am confident that we will move our mandate forward as we enter the final year of our strategic plan. We continue to work on our goals of enhancing capacity for risk factor surveillance; sharing of information, resources and tools; identifying and developing best practices and increasing participation in CARRFS.

While a lot of work is completed by the various working groups, it is still important for us to get

the feedback and support from the CARRFS membership at large. It is through this network of professionals that we can move our agenda forward and accomplish the goals which we have set out for ourselves. I encourage you to keep participating by sharing knowledge, attending CARRFS e-learning sessions and following up on or activities as they become posted on our website. We also welcome new volunteers to our working groups if you are interested in sharing your expertise in this capacity.

I thank you for your individual commitment to improve the health of Canadians in your various professional and employment roles.

As we enter into a new calendar year, I look forward to our continuing to work together as we strive to strengthen public health in Canada.

Betty Reid-White Chair, Canadian Coordination Committee, CCC


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CARRFS Profile...To help build our community, the CARRFS eNews profiles a leading member in each issue. In this issue we profile Dr. Drona Rasali, Director, Population Health Surveillance and Epidemiology at the BC’s Provincial Health Services Authority.

What is your background?I come from a professional background of veterinary medicine, with specializations received in health-related sciences including pathology, endocrinology, quantitative genetics and epidemiology. In my career path between 1980 and 2003, I held various roles from veterinary officer to senior scientist with the Government of Nepal. After completing my doctoral degree from the University of Manitoba, I worked in a national epidemiological project studying food safety systems (through pork traceability, to be specific) in Canada that involved both veterinary and public health. In 2005, I joined the Saskatchewan Ministry of Health as a provincial chronic disease epidemiologist. After my seven year tenure there, I moved to my current role as the Director, Population Health Surveillance and Epidemiology at British Columbia’s Provincial Health Services Authority. What inspired you to become an epidemiologist?A number of factors are involved: Firstly, I was frequently involved in epidemiological field investigations of disease outbreaks, when I was a Government vet deployed in remote districts of Nepal. During that time, I found myself more at ease working with the animal population/herds rather than clinically treating individual animals. Later in my graduate studies, I took on population level genetics, mortality and diseases for livestock production as my fields of interest. Secondly, as a student of pathology, I found the work of Rudolf Virchow, a German physician known as the Father of Pathology who was also a true public health epidemiologist, as a source of my inspiration. Also, my ultimate goal in life has been to serve people who are underserved in society. I found public health and health surveillance as a way forward for me in serving the people directly. Connecting all these, I became passionately inspired to become an epidemiologist landing on the population health surveillance. >>


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CARRFS Profile (cont’d)What do you spend the most time on in your current position?My current professional role involves the work of surveillance relating to population health for prevention of chronic diseases in British Columbians. Currently, the major activities of my professional work areas that take most of my time are developing a suite of priority health equity indicators for the province, profiling health indicators for communities across the province, as well as networking with the stakeholders for consultations on the major ongoing projects.

What was your motivation to become a member of the CARRFS?CARRFS was established for enhancing the capacity in surveillance of chronic diseases at the regional and local level. I have been engaged in its activities right from its inception following a national Think Tank Forum organized in 2008. Incidentally, ‘CARRFS’ name came from the Public Health Agency of Canada’s (PHAC’s) naming contest that I had won. The motivation for my engagement was simply my realization of the need for surveillance of behavioral, socio-economic and environmental factors at the local level that has been lacking.

How do you see the current role of the CARRFS in Canada today?CARRFS is an alliance of interested public health professionals and organizations working on risk factor surveillance [that] is playing a proactive role in building capacity through e-learning courses on relevant topics and profiling various surveillance systems through case studies across Canada. Both are foundational work for the development of a national surveillance system. PHAC’s continued support to the alliance has been pivotal.

What are the future opportunities for the CARRFS?We scanned the world literature and found that not many countries have specific programs of risk factor surveillance at the local level. Canada is a leading country in innovation for developing risk factor surveillance systems. CARRFS has a tremendous opportunity to network with provincial, regional and local health units and has a unique opportunity to develop models of local level risk factor surveillance systems to make a positive difference in public health. <>

By Jostein Algroy

Call for Interest

Are you interested in and available to contribute to setting strategy for CARRFS ? Do you have time to volunteer? We are looking for members for the working groups (training, tools & resources, and surveillance innovation) and the coordinating committee. These are two-year terms. Each group has a specific focus. The Training Working Group coordinates opportunities including bi-monthly e-Learning sessions and an e-Forum which will be informed by an updated needs assessment. The Tools and Resources Working Group identifies what tools and resources are out there and how to link those who “have” with those who “need”. They are looking at creative ways to make it easier to connect – including more use of our Twitter account and other networking options. The Surveillance Innovation Working Group is still in its initial stages, and there are opportunities to influence the direction that this group takes. The Coordinating Committee provides advice on the operation of CARRFS, and takes the lead in specific areas including the e-Newsletter and web presence. We have openings and would be pleased to hear from you if you want additional information, would like to nominate a colleague, or volunteer yourself. The strength of CARRFS lies in its membership: We encourage your contributions! <>


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Update...Updates from each CARRFS Working Group Chairs on recent activities. All working groups need members. Please get in touch with the Chair or a member of the working group and join!Training Working Group

The last several months have found the Training Working Group busy. We were pleased to have Audrey Layes step up to take the position of co-chair for the group. She has been a member of the working group for several years and we look forward to her continued leadership in this area. Audrey works as a Regional Epidemiologist with the Public Health Agency of Canada and is located in Halifax. At the end of November, we were fortunate to have an e-learning session lead by Dr. Elizabeth Kristjansson from the University of Ottawa titled “From Data to Action: Knowledge Mobilization in the Ottawa Neighbourhood Study". It was very interesting and included considerations for defining neighbourhoods, data sources used for describing the neighbourhoods, the types of indicators used, and examples of how the study information is being used by others in their decisions. If you would like additional information, you can visit the site: www.neighbourhoodstudy.ca <>

CARRFS CommitteesCARRFS CommitteesCARRFS CommitteesCARRFS CommitteesCARRFS CommitteesCARRFS CommitteesCanadian Coordination Committee

(CCC)Canadian Coordination Committee

(CCC)Tools and Resources Working Group

(TRWG)Tools and Resources Working Group

(TRWG) Training Working Group (TWG)Training Working Group (TWG)

Chair: Betty Reid-White Chair: Ahalya Mahendra Chair: M. Nawal LutfiyyaCo-Chair: Ali Artaman Co-Chair: Vacant Co-Chair: Audrey Layes

Tools and Resources Working Group

CARRFS members have indicated that they would like access to tools and resources related to surveillance and risk factors. The Tools and Resources Working Group have been strategizing on ways in which to get the word out to members. A suggestion has been to profile tools and/or resources through this newsletter – look in upcoming issues for more details. There has also been discussion about making better use of technology to connect with network members. Options such as twitter or blogs are being explored – if you have any ideas or suggestions, we would welcome the input. Finally, the group is exploring strategies to share best practices – whether through the website or other avenues, the intent is to facilitate strategies to ensure best practices are known and accessible for members. <>

Invitation: Training Needs AssessmentThe Training Working Group has invited CARRFS members to complete a training needs assessment using Fluid Survey. We have preliminary data which will help to guide the direction in which training goes into the next several years. This is the second needs assessment and the group felt the time was right to get input from the network with respect to needs, opportunities and experts who could present on specific topics. If you wish to provide your input, use the following link: http://fluidsurveys.com/surveys/carrfs-4/carrfs-training-needs-assessment/

http://www.neighbourhoodstudy.ca

http://www.neighbourhoodstudy.ca

http://fluidsurveys.com/surveys/carrfs-4/carrfs-training-needs-assessment/





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Hello & Goodbye...This is the place to welcome new members to the CARRFS Steering Committee - The Canadian Coordination Committee (CCC) and honour those who have to leave the committee to pursue or fulfill other commitments.

Send us your StoryWe urge all members to send us articles for upcoming editions. Since we are promoting a bilingual newsletter, articles will be published in the language they are submitted - English or French. Please submit your story to the CARRFS eNews Editor in Chief at [email protected]

Betty Reid-WhiteWe welcome Betty Reid-White as the new Chair for CARRFS. Since joining the CARRFS Training Working Group in 2010, Betty was involved in organizing the eLearning sessions and the regional workshops. In 2011, Betty became co-chair of the eForum Planning Subcommittee and was actively involved in organizing the CARRFS 2012 Pan Canadian eForum: From Surveillance to Action: Building Usable Knowledge. Betty joined the Canadian Coordination Committee (CCC) in the spring 2012. Betty is a Registered Nurse and has a Master of Science in Community Health Administration and Wellness Promotion. Betty has completed the EXTRTA fellowship – Executive Training for Research Application, from the Canadian Health Services Research Foundation. Prior to Betty’s current

position as owner/operator of a travel clinic providing adult immunizations and travel consultation and vaccinations for clients traveling abroad, she was director with a regional health authority. In that position, Betty had responsibility for a variety of community-based programs including Public Health, Primary Health Care, Home and Community Care and Chronic Disease Prevention and Management. Betty’s vast experience from her various positions will help move CARRFS into the future with a strong focus on strengthening local/regional risk factor surveillance in Canada.

By Jostein Algroy

CARRFS is a network of public health stakeholders interested in working together to build

capacity for regional/local area chronic disease risk factor

surveillance in Canada that will be used for chronic disease

prevention and control.

MANDATE

A sustainable and effective regional/local collection,

analysis, interpretation and use of risk factor data to

inform program and policy decisions in Canada.

VISION

To build and strengthen the capacity for regional/

local risk factor surveillance in Canada.

MISSION



Documents

CARRFS eNews Winter 2014