Online publication for the Canadian Alliance for Regional Risk Factor Surveillance.
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CARRFS eNews www.carrfsenews.ca Volume 5, Issue 2, Spring 2015 Canadian Alliance for Regional Risk Factor Surveillance - Quarterly eNewsletter CARRFS Interview The Future of Public Health Surveillance Dr. David V. McQueen former Director, US Centers for Disease Control and Prevention CARRFS Profile Lynne Russell Coordinator, Ontario’s Rapid Risk Factor Surveillance System (RRFSS) CARRFS Feature Not a Pretty Patchwork: Canadian Indigenous Health Risk Factor Surveillance
Transcript
CARRFS eNewswww.carrfsenews.ca Volume 5, Issue 2, Spring 2015
Canadian Alliance for Regional Risk Factor Surveillance - Quarterly eNewsletter
CARRFS Interview
The Future of Public
Health Surveillance
Dr. David V. McQueen
former Director, US Centers for
Disease Control and Prevention
CARRFS ProfileLynne
Russell Coordinator,
Ontario’s Rapid Risk Factor
Surveillance System
(RRFSS)
CARRFS Feature Not a Pretty
Patchwork:Canadian
Indigenous Health Risk
Factor Surveillance
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Not a Pretty Patchwork: Canadian Indigenous Health Risk Factor Surveillance 6 CARRFS eNews examines the utilization of health risk factor surveillance in Canada’s indigenous communities. By PAUL WEBSTER
CARRFS Interview 11 Dr. David V. McQueen, former director for the US Centers for Disease Control and Prevention (CDC) Behavioral Risk Factor Surveillance System (BRFSS), talks to CARRFS eNews about the future of data collection and how epidemiologists must position themselves to maintain their future relevance. By JOSTEIN ALGROY
Surveillance Facts 15 Dr. Bernard Choi, Public Health Agency of Canada, provides Part IX of his series on the evolution of Public Health Surveillance. By BERNARD CHOI
CARRFS Profile 18 The CARRFS Member Profile: Lynne Russell, Coordinator, Ontario’s Rapid Risk Factor Surveillance System (RRFSS). By JOSTEIN ALGROY
Table of ContentsFrom the Editor ................................................................. page 3
CARRFS Profile: Lynne Russell .......................................... page 18
CONTRIBUTORS
Jostein Algroy, Editor-in-Chief Steven Frei, Senior Copy Editor Paul Webster, Health Science Writer Dr. Bernard Choi, Science Writer Mary Lou Decou, Senior Writer Ali Artaman, Canadian Coordination Committee, Co-Chair
PAN-CANADIAN EDITORIAL ADVISORY BOARD
Jostein Algroy, Editor-in-Chief Paul Webster, Health Science Writer Anne Simard, Chief Public Affairs Officer, Public Health Ontario Mary Lou Decou, Epidemiologist, Public Health Agency of Canada Dr. Bernard Choi, Senior Research Scientist, Public Health Agency of Canada Dr. Elizabeth Rael, Senior Epidemiologist, Ontario Ministry of Health and Long-Term Care Larry Svenson, Director, Alberta Ministry of Health Dr. Drona Rasali, Director, British Columbia Provincial Health Services Authority
SECRETARIAT SUPPORT
Public Health Agency of Canada Mary 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.
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.
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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 take a closer look at Health Risk Factor Surveillance for Canadian indigenous people.
The statistics from Canada’s First Nations communities are startling. By age 60, approximately half of First Nations adults have been diagnosed with four or more chronic health
conditions — most commonly high blood pressure, diabetes, arthritis, and back pain. The rate of diabetes in the First Nations population is three to five times higher than that in the general Canadian population, and the rate of heart disease is 1.5 times higher. Approximately 57% of First Nations adults are smokers.
But people in some First Nations communities are very healthy. The question is: Why are some indigenous communities thriving and others not? As Paul Webster reports in his investigation for this issue of CARRFS eNews, there are startling gaps in indigenous health data and the current patchwork of data is inadequate for health policy development.
Inadequate data is a widespread problem, according to David V. McQueen, retired director for the US Centers for Disease Control and Prevention (CDC) Behavioral Risk Factor Surveillance System (BRFSS). As McQueen reveals in his interview with CARRFS eNews, most countries are not doing enough to collect public health data and the type of data gathered is problematic. Furthermore, McQueen argues that epidemiologists must move away from providing simple descriptions of disease prevalence and look at the bigger picture of diseases within their social contexts.
Organizations such as CARRFS, the Americas Network for Chronic Disease Surveillance (AMNET), and World Alliance Risk Factor Surveillance (WARFS) should be supported, McQueen argues, to map out the future of surveillance.
In that spirit, CARRFS eNews is expanding its reach!
We have made agreements with the Canadian Public Health Association (CPHA) and the WARFS to be included on their mailing lists.
This will bring the newsletter to thousands of new readers. It’s great news for CARRFS!
We hope you enjoy this issue of CARRFS eNews.
Jostein Algroy Editor-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 idea or story to [email protected].
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New
s & Trends Baby Boomers: Body Weight has likely
undermined improvements in health Are Baby Boomers healthier than previous generations? A study by a Toronto-based research team published in the March 2015 issue of the Milbank Quarterly found “no evidence to support the expectation that baby boomers will age more or less healthily than previous cohorts did.” The study concluded that increasing Body Mass Index “has likely undermined improvements in health that might have otherwise occurred” which “suggests that interventions to improve health, such as reducing obesity, can be targeted to the entire, or a major portion of the population and need not single out particular birth cohorts.” (http://www.milbank.org/uploads/documents/featured-articles/pdf/Milbank_Quarterly_Vol-93_No-1_Benefits_Gained_Benefits_Lost.pdf)
Conference: Rethinking Public Health
The Association of Local Public Health Agencies (alPHa) is holding their 2015 Annual Conference in Ottawa, June 7-9, 2015. “Rethinking Public Health” will explore key priorities for public health. http://c.ymcdn.com/sites/www.alphaweb.org/resource/resmgr/2015_june_conference_/v3_draft_program_june_2015_a.pdf
Conference: Public Health 2015 The Canadian Public Health
Association The Canadian Public Health Association (CPHA) will hold its Public Health 2015 Conference in Vancouver, May 25-28, 2015. The conference shares the latest research and information, promotes best practices, and advocates for public health issues and research-grounded policies. Themes include family health, public health education, food safety health equity, and health promotion. http://www.cpha.ca/en/conferences/conf2015.aspx
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s & Trends
The 2015 WARFS Global Conference in Antigua
The 2015 WARFS (World Alliance for Risk Factor Surveillance) Global Conference will be held in St. John's, Antigua (Caribbean) November 17-20, 2015. Themes of the conference include (1) the role of big data and innovative technology in future surveillance, (2) tracking of positive health, and (3) global inequity in surveillance capacity. WARFS is the Global Working Group on Surveillance under the International Union for Health Promotion and Education (IUHPE). It supports the development of behavioural risk factor surveillance as a tool for evidence-based public health, acknowledging the importance of this information source to inform, monitor and evaluate disease prevention and health promotion policies, services and interventions. Dr. Bernard Choi of CARRFS is on the WARFS International Scientific Committee to plan for the program of the 2015 WARFS Global Conference. For further information please visit the WARFS http://www.warfs.info/.
World Bank and Public Health Safeguards The World Bank’s increasingly diverse portfolio has grown to more than US$1 billion in annual commitments for health, nutrition, and population activities. As a result, the decisions made by the World Bank have an increasingly large influence on the health of the world’s population. It is therefore essential for the global health community to pay close attention to the World Bank’s proposed new Environmental and Social Framework which is being designed as a safeguard against any unintended health, social or environmental consequences that might result from the Bank’s policies and investments. The new framework, which replaces safeguards originally put in place in the 1980s, is currently being reviewed by stakeholders worldwide. It is crucial that the global health community keeps abreast of these reviews to ensure that the proposed safeguards recognize the importance of healthy human capital to the success of any project. URL: http://www.thelancet.com/journals/langlo/article/PIIS2214-109X(15)70012-4/fulltext
Global Tends for Tobacco Use Countries that agreed to reduce the prevalence of tobacco smoking by 30 percent by 2025 (a target outlined in the WHO global monitoring framework) have met with varying results. From 2000 to 2010 the prevalence of tobacco smoking in men fell in 125 or 72% of the participating countries, and in women the prevalence fell in 156 or 88% of countries. However, many countries are not on track to achieve their targets. Only 37 countries (21% of participants) are on track to reach their targets for men and 88 countries (49%) are on track to reach their target for women. It is estimated that there will be approximately 1.1 billion tobacco smokers in 2025. The biggest increases in tobacco use are projected to be in Africa and in the eastern Mediterranean for both men and women. Canada has a high probability of reaching its target — especially for women. The WHO encourages the global community to continue to work toward a global elimination of tobacco use. URL: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)60264-1/fulltext
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Not a Pretty Patchwork:Canadian Indigenous Health Risk Factor Surveillance
CARRFS Feature...
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Not a Pretty Patchwork:Canadian Indigenous Health Risk Factor Sur veillance
Paul Webster explores a range of issues associated with Canadian indigenous Health Risk Factor Surveillance.
The risk factors affecting the health of indigenous Canadian adults are often severe. According to the most recent nationwide survey, which reached almost 22,000 people living in 216 First Nations communities in 2008, approximately 57% of adults over 18 years old in First Nations communities are current smokers. 40% are obese. Almost 50% are physically inactive. Only 30% eat a nutritious and balanced diet. Among First Nations women, 40% have never performed a breast self-examination, and 59% have never had a mammogram. First Nations males were much less likely than those in the general Canadian population to undergo a physical prostate check.
The social realities behind these risks are stark. 58% of adults living in First Nations communities reported a total annual personal income of less than $20,000. Only 4.9% of First Nations adults reported having obtained a university under-graduate, graduate, or professional degree, compared to 22.6% of the general Canadian population. About one-quarter of First Nations adults live in over-crowded housing — triple the figure among the general Canadian population — and half of First Nations adults were living in homes with mold or mildew. >>CA
RR
FS F
eatu
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CARRFS Feature...CARRFS Feature (cont’d) Indigenous health outcomes dramatically mirror these risks. By age 60, approximately half of First Nations adults have been diagnosed with four or more chronic health conditions — most commonly high blood pressure, diabetes, arthritis, and back pain. The rate of diabetes in the First Nations population is three to five times higher than that in the general Canadian population. The rate of heart disease is 1.5 times higher among First Nations. Approximately half of all First Nations adults reported either moderate or high levels of psychological distress, compared to one third of adults in the general Canadian population. First Nations adults are two and a half times more likely than other Canadians to report suicide ideation at some point in their lifetime.
Similarly disturbing risk profiles prevail among First Nations youth, children, and infants. First Nations mothers are 33% less likely to breastfeed than other Canadian mothers. Almost half of First Nations mothers smoke during pregnancy. One in three youths living in First Nations communities are smokers, compared to one in twelve youths in the general Canadian population. Approximately half of First Nations youth are overweight or obese. Injuries are responsible for 26% of deaths of First Nations youth compared to 6% of deaths in the general Canadian population. Of the First Nations youth who consume alcohol, more than half report frequent binge drinking (once a month or more) — a rate much higher than in the general Canadian youth population.
These figures are drawn from First Nations Regional Health Survey (RHS) Phase 2, which was initiated in 2008 and completed in the fall of 2010. Coordinated nationally by the Assembly of First Nations, and guided by the First Nations Information
Governance Committee, with representation from regional First Nations organizations, the RHS revealed stunning inequities between the health of indigenous and non-indigenous Canadians. This survey, says Fred Wien, lead investigator in the Halifax-based Atlantic Aboriginal Health Research Program, contains the best health surveillance data currently available for Canada’s 1.4-million indigenous people. But startling as they are, the RHS data are troublingly incomplete, since they do not include data from the estimated 60% of indigenous Canadians who live “off-reserve”.
And the data are increasingly dated, adds Wien. “The RHS is scheduled to go into production for another round this calendar year,” he explains. But the detailed planning, he notes, “hasn’t started yet, at least it’s not visible yet at the regional level.” In the meantime, says Wien, the First Nations Information Governance Committee is in the midst of a survey called First Nations Regional Early Childhood, Education and Employment Survey (REEES). The REEES was conducted in 250 randomly selected First Nations communities (239 reserve communities and 11 communities in the north) in 10 regions across the country with the initial results scheduled to be released in 2015. An environmental scan of First Nations, Inuit and Métis population health surveys conducted in 2011 by Kue Young, Professor and Dean of Public Health at the University of Alberta, notes two other datasets
alongside the RHS. The Aboriginal Peoples Survey (APS), which was conducted by Statistics Canada after the censuses of 1991, 2001, 2006, and 2012, contain a variety of social, economic, and health-related variables. But these data are not representative of the national or provincial on-reserve population, Young reported, and results from analyses of APS on-reserve data is only representative of the participating reserves. >>
“By age 60, approximately half
of First Nations adults have been
diagnosed with four or more chronic
health conditions.”
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A 2012 Health Canada study titled “Denominator Guidelines for Health Surveillance in First Nations Populations in Canada” echoes Young’s concerns around surveillance terminology. “Calculating rates for this population can be difficult, due to limitations in data sources to provide accurate and timely population estimates,” Health Canada acknowledged. “Finding an appropriate denominator to calculate rates for First
Nations health data has been a long-standing challenge.” Canada’s indigenous health surveillance system, says Dr. Janet Smylie, a Research Scientist with the Centre for Research on Inner City Health, St. Michael's Hospital in Toronto, “is pretty patchwork, with absent or poorly standardized indigenous identifiers.” Increasingly, indigenous researchers are questioning not just the coherence of this surveillance patchwork, says Malcolm King, Scientific Director for the Canadian Institutes of Health Research’s Institute of Aboriginal People’s Health, but its overall orientation. King, alongside Jeff Reading, interim director of the University of Toronto’s newly-launched Institute for Indigenous Health, calls for applying “life course epidemiology” to aboriginal health research. Reading agrees, noting that
the problem with the adult risk factor approach is that, “while adults are being targeted to change their lifestyle habits, the next generation will grow up in the same conditions that have fostered the development and onset of chronic disease in their parents. When these conditions are grounded in poor socioeconomic status, the disease risk is increased and the applications of an adult lifestyle approach to chronic disease is ineffective. Social disparities and inequities in health documented in Aboriginal communities across the country suggest that an adult risk factors approach alone is not enough.” >>
CARRFS Feature (cont’d)Young also noted a series of surveys, known as the
Inuit Health Surveys (IHS), conducted in the 4 Inuit regions during 2004-08 by academic researchers at Laval, McGill and Toronto universities in collaboration with Inuit regional organizations and territorial governments. Preparations are currently underway to mount another IHS in 2016, says Mylene Riva of the Centre de Recherche du Centre Hospitalier Universitaire de Québec. Riva is also the lead of a project aiming to build a circumpolar Inuit health cohort study, which for now includes only Nunavik and Greenland. “We are at the beginnings of developing the project in collaboration with the community,” she explains. “I think we are a few months away from having something concrete to share. It’s not yet fully funded. The whole survey is under the umbrella of the public health division of the Nunavik Regional Board of Health and Social Services.”
Although there is a long history of health surveys in Canada, none of the surveys conducted since 2000 sampled all Aboriginal groups — First Nations (on- and off-reserve), Inuit, and Métis — in all regions, Young noted in his scan. “It is evident that surveys conducted by Statistics Canada have avoided (or were unable to cover adequately) First Nations reserves,” Young concluded, while noting that defining who is an Aboriginal person “is a major problem, as different surveys used different definitions and criteria.”
For national surveys conducted by Statistics Canada, Young explained in his scan, the concepts of “ancestry” and “identity” have been used, and for some years, also “race”. Depending which concept was used, and how the question was constructed, Young lamented, “the resulting Aboriginal populations differ and do not overlap completely.”
“Canada’s indigenous health surveillance
system, says Dr. Janet Smylie, a Research
Scientist with the Centre for Research on Inner
City Health, St. Michael's Hospital in
Toronto, is pretty patchwork, with absent or poorly standardized indigenous identifiers.”
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In the last 20 years, life course epidemiology — defined as the study of long-term effects of physical or social exposures during gestation, childhood, adolescence, young adulthood, and adult life on one’s developmental health and later disease risk — has emerged as an alternative approach to the prevailing adult risk model, says Reading.
“While statistics paint a grim picture and need to be used to target public health efforts, not all aboriginal people are unhealthy,” Reading argues. “Extreme poverty and ill health are concentrated in some aboriginal communities but not all.”
The burning question, says Reading, is “why are some aboriginal communities healthy and others not?” <>
Malcolm King, Scientific Director for the Canadian Institutes of Health Research’s Institute of Aboriginal People’s Health
“In the last 20 years, life course
epidemiology … has emerged as an
alternative approach to the prevailing adult risk
model.”
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CARRFS Interview...
The Future of Public Health Surveillance
Dr. David V. McQueen former Director,
US Center for Disease Control
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CARRFS Interview...Could you describe your achievements in the field of health surveillance? My main work in health surveillance began when I was a professor at the Johns Hopkins School of Public Health back in the late 70s and early 80s as a consultant for the US Centers for Disease Control and Prevention (CDC). At that time the CDC established a team of consultants to develop the strategy for what would become the Behavioral Risk Factor Surveillance System (BRFSS). The idea was to develop a system where each state would collect data related to risk factors for chronic diseases. In the beginning it was quite simple. We took the leading causes of death from chronic diseases such as cancer, heart diseases, diabetes, etc. and looked at what were the individual risk factors related to these diseases, such as smoking, diet, physical activities, alcohol use and so on, and asked questions related to that. We then trained employees at the state level to collect data through telephone interviews, which was quite innovative compared to visiting houses and/or mailing out questionnaires.
Shortly thereafter, I became professor and head of a new research unit in health and behaviour change (RUHBC) at the University of Edinburgh in Scotland. The Scottish Government wanted to find out why Scotland had such dreadful chronic disease outcomes. The experience from CDC and the development of BRFSS led to a move from behaviour risk factor surveillance, to surveillance of lifestyle and health and to the introduction of computer assisted telephone interviews (CATI). Since personal computers were now available, we could hire interviewers to collect data on the phone and input it directly into a PC. This technological breakthrough enabled us to collect data “continuously”.
Historically, one of the problems with data was the variation in personal behaviour related to time in the week, time in the year and so forth. By collecting data
continuously we would minimize this data error. But we went further by collecting data systematically, analyzing and reporting the data systematically. This was a methodological breakthrough from surveys with infrequent data collection patterns. One of the main problems with surveillance data — particularly in risk factor surveillance — was that it wasn’t current. One collected the data and it could go two to three years before the data was published. We wanted to solve this problem.
After 10 years in Scotland, I came back to CDC and I was asked to be director of the BRFSS. I led
that for several years and thought about spreading it to other countries. We started in 1999 with the first meeting that became a bi-annual meeting bringing together people from different countries and assisting them to develop similar programs. These particular meetings ultimately became the World Alliance for Risk Factor Surveillance (WARFS) and we decided to join with the International Union for Health Promotion and Education (IUHPE) as it was important to link risk factor surveillance to health promotion and to the use of the data for policy and ongoing programs.
You’ve retired from the CDC - are you still active in the global community of surveillance? What motivates me is that the vision I had over the years — building useful and continuous data collection and connecting with people that are interested in this idea — that vision is
not complete. There is a lack of people who are collecting data that tries to look at the causes of the causes in chronic diseases, but I think there is also a strong need for much more and better analysis. I think that most of the time we just write reports with cross tabulations by single variables – e.g. how many people smoke rather than trying to build analytic systems that look comprehensively at how these variables fit together. I think that that lack of in-depth analysis, and tying the usefulness of the data for policy and health promotion as the end goal for surveillance, is still work in progress. >>
“I think public health at present is in retrograde
motion… retreating back to its hygiene base with a focus on
individual disease causality.”
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CARRFS Interview (cont’d)Where is public health heading in general? I think public health at present is in retrograde motion. Public health was moving along quite well, but due to the events happening in the world public health is retreating back to its hygiene base with a focus on individual disease causality. I think this has been accelerated by the ebola epidemic, bio terrorism, influenza outbreaks, etc. Those events get attention and avert people (and resources) away from other areas. So I think that the chronic disease risk factor surveillance area is still in the same struggle for recognition.
A few years back, there was so much interest in the social determinants of health after the Marmot report came out — and for a moment everybody was paying attention. There are probably many factors for the loss of this momentum. Infectious disease outbreaks do get much attention, but I also think that the government’s austerity programs have got public health to retreat to its comfort zone — infectious diseases. If you are going to cut programs, you will cut programs that are at the edge of the public health sector. This is why health promotion currently suffers so much. It appears to people as a luxury, but I would argue that it is the opposite.
What are the biggest challenges epidemiologists face today? How is the profession preparing for these new challenges? I think the profession of epidemiology is going through a lot of changes. The historical success of epidemiology is in the description of the prevalence of disease — that has always been its big focus. The biggest challenge is to move away from that simple description, as it doesn’t tie into health promotion and the broader social context that is necessary to make epidemiology more meaningful. There have been a lot of good efforts over the last 5-10 years to develop social epidemiology — integrating epidemiology into social concepts. But they are very limited and still not mainstream as far as I can see. For me the main challenge is that epidemiology has become “over-biomedicalized” and needs to be more about public
health and a bit less about clinical medicine. It doesn’t have a good understanding of health and disease in a broader sense. There is no good epidemiology epistemology about what the field is and therefore it retreats to more simplistic approaches.
Are we in public health focusing on the right things and using the right methodologies? To a limited extent I think we have done quite well. There is, however, a need for a radical overhaul of
what we ask about, and how data are used and thought about. The sort of problems that come up — even if you are looking at the social determinant literature — talk about issues like poverty and inequity and so on. But the analysis of data that comes from this is looking at risk factors and retreating back to looking at smoking, drinking sedentary behaviour, etc. This is where the science is — the comfort area. If you think that the ‘causes of the causes, are the really important things, then those are the type of data you need to look at and concentrate on.
Do you think that the data you define is readily available and you really have to work hard to find the other data? Yes, I think so. But again, so much is involved with training. If you think how people are trained in public health — they have traditionally been trained in biomedicine and from that perspective it is not surprising that this is a comfort zone when dealing with diseases and direct outcomes — even behaviour as an outcome. We can think about the causes of behaviour — what behaviour leads to causes of disease outcome — but we don’t. We tend to not go there. We really do need to rethink how we collect new data.
What impacts will emerging technologies have on public health risk factor surveillance? I think they will have enormous impact. There is no doubt about that. If you look back to my personal history and the development of computers and >>
“If you think that the ‘causes of the
causes’ are the really important things,
then those are the type of data you
need to look at and concentrate on.”
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CARRFS Interview (cont’d) the patchy approaches to collect data and to analyze them, that is an example of technological impact that really made a difference in the way we made surveillance of risk factors. I think what is happening now with all the new devices that are available and the use of the internet and so forth, is really an area which will have terrific impact on how we collect data, how we look at data, what constitute data, and how to rethink what it is that we are looking at. So yes, I can just say if I were not retired and if I were working in this field full time this would be the area I would really concentrate on — because this is the future.
Who is working in this area? Some of the people who are working with WARFS are starting to discuss this topic. I know that people at the CDC are worrying about this, and people working in behaviour risk factor surveillance are thinking about the use of such things as the internet. But it really could mean a totally different way of understanding “what is a sample?” This is one of the problems and requires a huge rethink. If you take an area like sampling, this development has enormous implications because sampling used historically is based on where people live, if they are in a household and all those kinds of things. And now suddenly sampling is coming out of people’s wearable devices and the social media they are using. What constitutes a “sample” seems like a fundamental question. I don't know the answer to this question, but I am hoping that there are people that are really considering this in detail. And I am hoping that in our meetings in WARFS and other organization we are really addressing this issue.
Where do you look for information on new developments? I think it follows from what we have discussed before. I think that people who are working in this area need to get out of the public health biomedical box and look at efforts in the social sciences — in the so-
called softer sciences — and looking at other potentially relevant approaches. We have to move away from seeing that the solution is going to be found in the traditional public health boxes. That requires different kinds of people to get involved in surveillance.
What advice have you got for CARRFS? I think that organizations such as CARRFS, WARFS, and the Americas’ Network for Chronic Disease Surveillance (AMNET) are very good cutting-edge organizations. The problem is that they are on the periphery and not recognized as much as they should be by the established public health community. The ideas coming out of these organizations need to get into the mainstream of the public health sector. These organizations need to be recognized by the established
public health community such as the national agencies, the CDCs, the European CDCs and the World Health Organization (WHO). Many of these organizations tend to think that they have the expertise. I would, however, argue that it is the institutions like CARRFS, AMNET, WARFS, etc., the organizations that are actually doing surveillance, that have the expertise and need to be listened to. The importance of these organizations has to be recognized by these other organizations themselves as well as the global and national public health institutions. <>
By Jostein Algroy
“I think what is happening now with all the new devices that are available and the use of the internet and so forth, is really an area which will have terrific impact on how we collect data, how we look at data,
what constitute data, and how to rethink what it is that we are looking at.”
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Surveillance Facts...Part IX in a series about the Past, Present and Future of Public Health Surveillance. Written by Dr. Bernard Choi, Senior Research Scientist, Chronic Disease Surveillance and Epidemiology Division, Public Health Agency of Canada and CARRFS eNews science writer.
Past Systematic reporting of various diseases started in the United States in 1874 in Massachusetts. The Massachusetts State Board of Health inaugurated a plan for weekly voluntary reporting of prevalent diseases by physicians. A sample postcard was designed to “reduce to the minimum the
expenditure of time and trouble incident to the service asked of busy medical men”.
Globally, the public health surveillance program is coordinated by the World Health Organization (WHO). In 1965, the Director General of the World Health Organization established the epidemiological surveillance unit in WHO’s Division of Communicable Diseases. The first communicable disease surveillance report was published in 1966. In 1968, the 21st World Health Assembly established surveillance as an essential function of public health practice.
Present Passive Surveillance versus Active Surveillance - Passive surveillance systems refer to routine notifiable-disease reporting. This is simple and not burdensome to the health department but is limited by incompleteness in reporting. Also, because passive surveillance depends on people in different institutions to provide data, data quality and timeliness are difficult to control. To overcome limitations of passive systems, active surveillance systems involve regular outreach to potential reporters to stimulate the reporting of specific diseases. This can be used to validate the representativeness and completeness of passive reporting. As active surveillance employs staff members to regularly contact heath care providers or the population to seek information about health conditions, it provides the most accurate and timely information, but it is also expensive.
Chronic Disease Surveillance versus Communicable Disease Surveillance - There are differences between chronic and communicable disease surveillance methodologies, in terms of temporality, disease course, cause of disease, public health intervention, data sources, data collection, legislation and regulations, and comorbidity.
FutureEnhancing Global Public Health Surveillance - In global chronic disease surveillance, new global health surveillance networks have also emerged. Examples include the World Alliance for Risk Factor Surveillance (WARFS) and the Americas’ Network for Chronic Disease Surveillance (AMNET). WARFS is the Global Working Group on Surveillance of the International Union for Health Promotion and Education (IUHPE). It supports the development of behavioural risk factor surveillance as a tool for evidence-based public health, acknowledging the importance of this information source to inform, monitor, and evaluate disease prevention and health promotion policies, services, and interventions. There has been a series of biennial global conferences on risk factor surveillance, beginning in USA (Atlanta), 1999; Finland (Tuusula), 2001; Australia (Noosaville), 2003; Uruguay (Montevideo), 2005; Italy (Rome), 2007; Italy (Venice), 2009; Canada (Toronto), 2011; China (Beijing), 2013. The next WARFS global conference will be held in Antigua & Barbuda (St. Johns), in 2015. AMNET was established in Uruguay in 2003 as a regional network for the purposes of sharing information and experiences as well as providing opportunities for enhancing chronic disease surveillance in the WHO Region of Americas (North, Central and South America, and the Caribbean).<>
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> MESSAGE > PROFILE > MISSION >
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Chair’s Message Ali Artaman, Co-Chair for the Canadian Coordination Committee, (CCC) gives a status update on CARRFS achievements over the last quarter and what is in store for CARRFS over the months ahead.
CARRFS is exploring new opportunities and partnerships at the regional, national and international levels.
Considering the scarce resources — financial and human — for our Alliance initiatives, effective
networking and publicity are critically important.
I’m happy to report that after months of internal and external discussions, our CCC team has crafted a work plan for the upcoming year. This plan includes our actions and strategies to address the objectives of the CARRFS as we move forward.
The CCC team strongly believes that continuous feedback along with innovative and pragmatic ideas from the field frontliners and public health frontrunners are vital to the
progress and survival of our pioneer network, the only national alliance solely devoted to the promotion of disease risk factor surveillance.
We will welcome and take into serious consideration any suggestion and proposal related to the mandate of our Alliance.
Thank you for your continued support.
Ali (Al) Artaman, MD PhD MHA Co-Chair, Canadian Coordination Committee, CCC
CARRFS eNews www.carrfsenews.ca Volume 5, Issue 2, Spring 2015
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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 Lynne Russell, Coordinator, Ontario’s Rapid Risk Factor Surveillance System (RRFSS). What is your background? Well as you can tell, I have a bit of an accent as I am not from Canada. I am from the UK. I went to University in Dundee, Scotland and received my BSc in Town and Regional (Urban) Planning. So, actually I do not have a health-related background. Shortly after following my parents move to Burlington, Canada in 1993, I started a part-time position as Researcher at the Halton Social Planning Council (HSPC). At the same time, I also worked part-time at The Bay, in ladies fashions and, as my colleagues know, I have a bit of a passion for fashion, particularly ‘coordinating’ fashion accessories! After a few years at the HSPC, I was promoted to a Social Planner position and I was very happy to have worked there for 10 years. My time at the HSPC provided me with a background in qualitative and quantitative research, facilitating, presenting and report writing. It also gave me lots of experience in working with community organizations and government, and collaborating, particularly with the Halton Health Department. I was able to work on many projects with the Halton Health Department including the Nutritious Food Basket and Halton Food Bank Study. While at the HSPC, I applied for the Rapid Risk Factor Surveillance System (RRFSS) Coordinator job and started the position in 2003.
What led you to work in a health-related field? Even though I am not an epidemiologist/health professional, my work at the HSPC involved many projects that had a strong relationship to health. My work at the HSPC gave me a background in the social determinants of health and how the social and economic environment has an important influence on health. For many years, I was the Halton Representative for Campaign 2000, an organization that advocated to end child poverty in Canada because of the negative effects poverty has, particularly on children’s health. And I was fortunate to be able to present evidence on the relationship of family income and children’s health at the Legislative Assembly of Ontario’s Standing Committee on Finance. >>
CARRFS eNews www.carrfsenews.ca Volume 5, Issue 2, Spring 2015
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CARRFS Profile (cont’d) What do you spend the most time on in your current position? As the only RRFSS staff person, multi-tasking is the key word I would use to describe this job. In the same day I can be coordinating a request from an organization (such as Cancer Care Ontario or Public Health Ontario) to use RRFSS data from various health units in Ontario, posting documents on the RRFSS website (such as data dictionaries or user-friendly questionnaires), preparing agendas or minutes for the RRFSS Working Groups or updating financial information for the RRFSS Coordination budget. I never really have two days that are the same. Because the RRFSS Coordinator position was a brand new position it gave me a great opportunity to shape the role and it continues to evolve year by year.
As coordinator for RRFSS, what do you see as the future for RRFSS (in Ontario)? As with all telephone surveys, we are trying to find ways of addressing decreasing response rates and this is one of the reasons we are looking at mixed modes, specifically in the near future offering a RRFSS web survey. The RRFSS web survey is currently being implemented as a pilot with two Ontario health units. For each health unit it will be a random sample of 500 households each of two cycles, approximately 10 minutes long and will be conducted in parallel with the RRFSS phone survey in French and English. Participants will receive an advance letter and will receive additional calls to encourage them to complete the online survey. If the results prove successful, we plan to offer this web survey option to all health units in Ontario. Along with trying to increase response rates we hope that the survey will address trying to reach the younger age groups and, of course, decreasing costs.
What was your motivation to become a member of CARRFS? As RRFSS Coordinator I attended the US annual BRFSS Conferences and would often meet up with other Canadian representatives to discuss and share information on our respective surveillance activities and plans. This Group often included such people as Bernard Choi from PHAC, Jane Griffith and Tannis Erickson from Manitoba, and Yiqun Chen from Alberta. After a few years of getting together in the US at these annual BRFSS Conferences, we recognized the need for a forum or network that was Canadian that would provide the opportunity for
people with an interest in Canadian risk factor surveillance to come together. Not long after this, the Think Tank Forum was planned and then replaced by the name CARRFS with many of these same people on the Canadian Coordination Committee (CCC). In February 2008 I presented at the Canadian Collaborative Regional/Local Area Risk Factor Surveillance Think Tank Forum that was held in Toronto and the following year participated in the first CARRFS Symposium. Since then I was a member of the CARRFS Communications Working Group in 2008-09 and continue to keep abreast of activities through the electronic network and updates.
How do you see the current role of the CARRFS in Canada? Being one of the initial CCC members planning the ‘Think Tank’ I have seen CARRFS grow from a very small group of volunteers with a vision and passion to a large, well-coordinated network of members from across Canada. I have to congratulate all the volunteers who had a vision to create this alliance and the many who still continue to support and participate. CARRFS provides members, such as myself, with a network of others in the health surveillance community that are linked to share their knowledge and experience.
What are the future opportunities for the CARRFS? I think there is still so much we can share and learn with each other about surveillance. For example, I recently received an e-mail from the Montreal Public Health Department as they were interested in finding out more about the RRFSS web survey, and in turn shared the results of their local health surveillance web survey with us. In relation to this, I would perhaps suggest having future in-person conferences similar to the first CARRFS Symposium in 2009, a meeting place where like-minded people interested in risk factor surveillance can connect from across Canada. One theme I could suggest for such a meeting is to share and discuss the future of risk factor surveillance, such as using multi-mode surveys (e.g. web surveys, cell phones, panels) and share innovative ideas and practices. A second theme could be around data visualization and the ways of presenting and using data (such as info graphics and brain slides), to convey through images powerful key health messages in a graphic way. I think as it stands, CARRFS continues to give us an excellent mode so that we can share our knowledge and experience with those who work within the world of local risk factor surveillance. <>
By Jostein Algroy
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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]
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
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 Task 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! <>
