Proceedings of the Subcommittee on Population Health
Issue 5 - Evidence, May 14, 2008
OTTAWA, Wednesday, May 14, 2008
The Subcommittee on Population Health of the Standing Senate Committee on Social Affairs, Science and Technology met this day at 4:15 p.m. to examine and report on the impact of the multiple factors and conditions that contribute to the health of Canada's population — known collectively as the social determinants of health.
Senator Wilbert J. Keon (Chair) in the chair.
[English]
The Chair: Honourable senators, although there are more senators to come, we will proceed because we do want to hear from our witnesses. We are already 15 minutes behind schedule.
We have outstanding witnesses again this afternoon. Thank you all in advance for coming here and helping us with this deliberation and report. From the Federation of Canadian Municipalities, we have Michel Frojmovic; from the Canadian Council on Social Development, Pat Steenberg; from the Atkinson Foundation, Lynne Slotek; and my old friend John Millar, from everywhere, but currently from the Provincial Health Services Authority in B.C.
We will begin with Michel Frojmovic.
Michel Frojmovic, Director, Acacia Consulting & Research, Federation of Canadian Municipalities: I understand I have about five minutes. I will not go into any great detail but will provide an overview of something called the Quality of Life Reporting System (QOLRS), which has been led by the Federation of Canadian Municipalities (FCM) and represents approximately 1,700 municipalities in Canada, about 80 per cent of the population.
To clarify, I am here on behalf of FCM. I am a consultant working on the Quality of Life Reporting System and have been for a number of years. I can answer limited numbers of questions dealing specifically with the QOLRS.
The system was first established in the early 1990s in response to the CHST, Canada Heath and Social Transfer, the change in transfers for federal-provincial governments, and then the willingness by municipal governments to want to monitor and measure the impacts on the ground of what this means to citizens in their communities. That is the origin of the project.
The project now provides indicators across 10 domains, including environmental, social and economic, as well as health. It is based on members. There are 22 municipalities, representing over half of the population, typically larger Canadian cities, and it relies heavily on data, of course.
The data comes from a range of sources, Statistics Canada being one but by no means the only one. Issues of geography are important. Many of you have heard of the census metropolitan area, CMA. A CMA is not a city. The Toronto CMA, for example, represents the populations of the city of Toronto and the regions of Peel, York, Durham and Halton. If you are in Mississauga, you are lumped in with the Toronto CMA. I am sure the mayor of Mississauga is not too thrilled with that concept. We try to focus on municipal boundaries. It is an important part of this project.
Other than Statistics Canada, we rely on administrative data collected from municipal governments. They are a repository of a wealth of information. For example, issues of physical activity have become quite important and recreation services — parks and rec, as we call them — are delivered right across the country by municipal governments. They collect all sorts of information on parks and rec users — the cost of programs, the extent to which residents are making use of the programs, the presence of recreation facilities in the community. We rely on municipal administrative data as well. That is an important source of information.
One of the little exercises I did to try to relate the QOLRS to a social-determinants-of-health-population health framework was, if you rename some of what we call the 10 domains, the themes, with social determinants of health, it actually does a reasonable job of capturing that framework.
There is a table in the presentation notes showing the 10 domains across the top, each of which has anywhere from five to ten indicators. Because social determinants of health cover such a wide array of day-to-day life, it does a reasonable job of capturing many of those social determinants of health.
You have in front of you, in effect, a mechanism for measuring social determinants of health at a local or municipal level.
In terms of some key messages relating to data and access to data, I will run through these quickly. There should be some repetition that occurs around these key messages.
When we are talking about determinants of health, population health, a lot of health dynamics happen locally. Because they are happening locally, they need to be measured and understood locally. That includes municipal government, what is happening within a municipality but, within cities, what is happening on a neighbourhood scale. In any given city, you will see significant health inequities across neighbourhoods, as we all know. However, who understands local dynamics? Municipal governments are often in a good position to understand that. Accepting that health dynamics play out locally is one of the key messages, followed by understanding there is a role to be played by municipal government in making that connection.
Another one, as I mentioned, is that municipal boundaries matter. When we are talking about social data, the difference between a CMA and a municipality can be tremendous. That is true not just with the example I gave you, but even with how a survey is designed. Many sample surveys will only pick up enough responses to allow you to report nationally and provincially, sometimes by CMA, but often not at a city scale.
The way questions are posed and the lobbying that happens around them, ensuring that the questions going into the census reflect issues that are relevant at a local level, is vital. Having municipal government involved in helping to frame those questions is significant as well. Municipal boundaries also matter.
You have quite a healthy amount of health data out there, which the ministries of health will be on the receiving end of. It is often in a separate world, a separate silo from social data, and of course a lot of the determinants of health are about connecting social data with health data. How you can bring about the integration is important.
In Ontario, for example, you have health regions where there is a close working relationship with municipal governments. Often, your boards of health are municipal councillors. The scope for it is there but they do appear in separate worlds. How you bring together health data and social data, bring health data into the world of social scientists and social planners, is another critical element. Again, municipal government is there in an integrating way that understands and has its hands in many of these health and social worlds.
To close, there is also something called the municipal data liberation initiative, the MDLI, which will be talked about in more detail. It is essentially trying to understand the world of data from the point of view of municipal governments and making data available at lower cost. It gets expensive. One table will easily cost you $10,000. It is expensive to acquire this data, to analyze it and to make sense of it. We think that getting it into the hands of municipal governments, who can in turn make it accessible to a range of community associations at a local level, will be of great benefit to advancing a range of social determinants of health. I look forward to the questions as we proceed.
Pat Steenberg, Project Coordinator, Community Social Data Strategy, Canadian Council on Social Development: I would first like to thank the members of the subcommittee for inviting the Canadian Council on Social Development, CCSD, to appear and comment on your fourth report.
I would like to begin my comments with three facts that I think are of particular relevance. First, we live in a world that is characterized by rapid change, conflict, massive population migrations, growing personal insecurity and a widening gap between rich and poor.
The second fact is that we know as well that health is influenced not only by our genetic makeup, but also by the choices we make as individuals, and our social, cultural, physical and economic environments affect those choices.
The third fact is that place matters. Differences in health between neighbourhoods can be as big, or bigger, than differences between cities.
The council has been asked to comment on issue number one, which concerns tracking health outcomes and also supporting research on interventions to enhance the health of the population.
Because we are dealing with the social determinants of health, I have chosen to understand health in its broadest context, which is not only individual physical, social and mental well being, but also our capacity to produce and sustain our own population health without compromising the health of others elsewhere or, indeed, the health of populations not yet born.
At the council, I am responsible for something called the community social data strategy, or the CSDS. There are many acronyms — CCSD and CSDS — but CSDS is a national consortium of 16 regional data user networks, one incidentally in each of Canada's six largest cities. The consortium together includes more than 50 local municipalities, as well as police, social planning councils, health and family service agencies, school boards, United Ways, public libraries and a variety of other local organizations. CSDS functions as a gateway for these groups to collectively purchase and access over $1 million worth of data from Statistics Canada at a reduced cost.
We have three objectives — to increase data availability, to increase data accessibility and to increase user capacity, all at the community level. The first objective prompts us to improve and enlarge the social data supply; the second is to ensure those data are affordable, properly configured and easily acquired; and the third is to provide training and development around data access and analysis, particularly in the community.
CSDS data is used to understand social welfare and to assess and design social policies, programs and services, and our interests are very much consistent with others working in the area of population health. Unfortunately, and Mr. Frojmovic alluded to this, the social development and health sectors have become somewhat isolated, one from the other, and this disintegration is evident in the separation of research initiatives, resources and particularly of data. The social determinants of health make clear that we share the same goals and need to be working more closely together.
We all accept that objective statistical information is vital to an open and democratic society. I believe it is on the OECD, the Organization for Economic Cooperation and Development, website. We know today if you do not measure something, it simply does not count.
Moreover, recent developments in technology have resulted in a quantum leap in our ability to measure progress — that is, to assess where we are, either in terms of our own goals and objectives or compared to others, and how to evaluate the impact of our interventions.
However, we are in urgent need of improving, enlarging and rationalizing our social data stock in this country. Complex social analysis requires not only data and a lot of data, it also requires the right data. Nowhere is the right data more important than in our cities, where eight out of ten Canadians now live.
Canadians, as we know, are experiencing explosive growth. For example, between the 2001 and 2006 censuses, the city of Barrie grew by 19 per cent and the city of Red Deer grew by 22 per cent. Our six largest cities — which are obviously Toronto, Montreal, Vancouver, Ottawa-Gatineau, Calgary and Edmonton — each have over 1 million residents. Toronto has nearly twice that. The cities have together accommodated nearly three-quarters of Canada's population growth since the last census. Together, they are home to nearly one in two Canadians.
Municipal governments provide 63 per cent of the public services, and these include the public health and social services that address the social determinants of health but receive only 8 cents on every tax dollar. Cities must spend smart, and smart spending requires good data. With that being said, municipalities have not been a particularly well- served data constituency at the federal level.
To recap, urban populations are growing, not only in size but also in diversity. Increasing diversity is often associated with increased poverty and social exclusion, while the marriage of diversity and density changes the framework for social interaction. We know that social disadvantages concentrate in certain neighbourhoods, and that concentrating social disadvantage accentuates its impact.
There is a critical need for new municipal social infrastructure, and it is infrastructure that recognizes the importance of place. Mr. Frojmovic also spoke about place. Place is the term used to describe a geographic area that has meaning to people, as opposed to `community' which denotes shared interests and concerns, et cetera, regardless of place of residence. We all know that a child does better in a healthy family, and a healthy family is more likely to be healthy in a supportive neighbourhood.
We also know, on the other hand, that residents of distressed neighbourhoods are more likely to be poor, unemployed, uneducated, unhealthy and victims of crime and abuse.
Using data to create neighbourhood profiles enables us to explore the relationship between neighbourhood effects, such as the social determinants of health, and individual well-being outcomes. It also allows us to explore the relationship between neighbourhood characteristics and neighbourhood effects.
However, in order to link neighbourhood characteristics and neighbourhood outcomes, we have to have access to more and better neighbourhood data, as well as to such things as consistent protocols for neighbourhood profiling.
There are many Canadian researchers and planners who are currently developing and using neighbourhood profiles and developing well-being outcome indicators. However, much of their knowledge goes unused or underused either because the data does not match or because people simply are not aware of what is going on in these different areas.
Moreover, Canada is a country that remains considerably behind other countries in terms of making social data available at the neighbourhood level. For this reason, we are concerned that we do not have at present the appropriate evidence — that is, the indicators, data and methodologies — to validate our intervention decisions and to measure their impact.
The census provides the richest body of social data and one of the few that can be disaggregated down to the neighbourhood level. However, while social planning tends to be at that level, the standard census geographies do not recognize that. Instead, neighbourhood data must be extracted separately and at considerable cost. Also, one has to bear in mind that census data is only available once every five years, which can be problematic in times of rapid growth.
National survey data, as Mr. Frojmovic said, is available more frequently, but sample sizes are typically too small to make them very useful to most municipalities, particularly at the sub-municipal and neighbourhood levels.
Further, another problem is that social data analysis requires that data be tracked over time, so unless the questions are asked in the same manner and retained over successive surveys, that tracking information simply is not available.
CSDS members want more social data, we want more timely data and we want it at locally meaningful geographies. We also want the right to share that data freely with others in our communities.
Statistics Canada restricts the use of its data through licensing. Revenues realized through licensing and other cost recovery measures are necessary to the agency's continued operation. However, licensing restrictions can mean that the same data tables, the $10,000 data tables, are bought many times over. The costs imposed by the licensing policy seriously constrain the capacity of local-level organizations to access, use and publicize information relevant and important to their communities.
We strongly recommend that the annual parliamentary appropriations to Statistics Canada be increased to ensure the agency can continue to meet the emerging needs of Canadian municipalities and their communities.
The federal government currently collects and generates a wide and rich variety of social data that is not, or is not presently, shared with other areas or orders of government or with community-level users. At the same time, as I have said, numerous Canadian researchers, sometimes several within a single department, are working to define and track well-being. We believe now is the time for consolidation, rationalization and interdisciplinary cooperation.
The council believes that a significant first step in addressing the national data deficiency would be to create and populate a national data inventory that would acquire, compile, organize, store and disseminate social data. Systemizing the data will enhance its accessibility, will permit comparisons, will ensure data collections are mutually reinforcing and not duplicating, and will lower or remove costs.
We would support the enrichment and expansion of the population health database for this purpose. However, such a resource must be seen as part of, and developed within, the context of a national social data strategy. It must also be understood broadly as a community resource, not solely or even primarily one for the health sector. Moreover, different levels of government should share the funding and maintenance of that resource, but its design and development from the beginning should involve all significant users, particularly those working on the ground in public health and social development. This is not presently happening.
Again, the database should be developed and managed by an appropriate partnership of data providers and data users, including Statistics Canada, relevant governments, the National Council on Welfare, the Public Health Agency of Canada, the Canadian Index of Wellbeing, the Federation of Canadian Municipalities and the Canadian Council on Social Development, among others. The partners themselves should decide on an appropriate distribution of roles and responsibilities.
Your interest in tracking and measuring the social determinants of health is evidence of the growing interest generally in the provision and use of social data. It also reflects what we at the CCSD view as a paradigmatic shift in how we understand and evaluate individual and societal well-being.
To understand population health, we need to know how well-being is distributed among the population, and we also need to know those factors accounting for that pattern of distribution. Aggregate measures mask significant variations in well-being distribution. They inevitably bias analysis away from recommending change in favour of preserving the status quo.
The Chair: That was excellent. It leads right into, I believe, Lynne Slotek.
Lynne Slotek, National Project Director, Canadian Index of Wellbeing, Atkinson Foundation: Thank you for the opportunity to speak to you this afternoon. I am the National Project Director of the Canadian Index of Wellbeing, CIW, housed at the Atkinson Charitable Foundation. With the clerk's support, I provided you with a PowerPoint deck which gives you some information regarding what is the Canadian Index of Wellbeing. I will not go into a great deal of detail but will provide a summary in the context of what is possible if we were really able to address the data gaps and increase the potential of dissemination of data across Canada.
The Canadian Index of Wellbeing is a project that has been in development since 1999, but more intensely since 2004. It is a pan-Canadian endeavour built by a group of researchers and indicator practitioners from St. John's, Newfoundland, all the way across to Whitehorse, Yukon. We have used the best data available at Statistics Canada and others, but we have also used a public engagement process whereby we have gone to Canadians twice and done public consultations across Canada about what well-being means to them.
The intent of this is to build a national understanding of what well-being is across eight domains. We call one of those domains healthy populations, which is the social determinants of health, although when you look at the others on the list, including living standards and community vitality, it reflects many other aspects of social determinants of health. The intent is to build a trend line by taking eight domains and integrating them into one single number so that we can actually take a look, over time, at whether Canada is progressing towards well-being or away from well-being.
It is built on a set of national values, everything from security to sustainability, to equity, fairness and inclusiveness, all those values that we hear Canadians talk about quite repeatedly. Although we talk about our differences — and there are and we need to take into account our diversity — I was struck, in the public consultations, by how much we have in common around values.
The underpinning of the CIW is based on nine core Canadian values. The CIW includes eight domains with 64 specific and measureable indicators that form single numbers which tell us about progress toward well-being or away from well-being. That is the goal; that is the vision.
What I want to talk to you about is what we have learned in terms of getting from this point to rolling out the Canadian Index of Wellbeing for Canadians over the next six to nine months.
First and foremost is that social determinants of health time serious data are time limited and have serious gaps. In order to establish trend lines, one must be able to populate and have points in time. I believe Dr. Millar will probably speak about some of the serious gaps, but I would also like to affirm that issues around poverty, homelessness, affordable housing, food security and income security are not well tracked. If we really are serious about taking a look at the social determinants of health, and changing the dialogue and paradigm about what well-being looks like in Canada, we must start tracking that information.
I will not belabour the point, but there is also the need for increased data collection. Although the Canadian Index of Wellbeing is not intended to develop at the local level, we are incredibly struck in our partnerships with people like FCM, the Community Foundations of Canada's Vital Signs and the United Way's Action for Neighbourhood Change, that there is a thirst for that knowledge. Planning cannot be done at the local level, and one cannot do horizontal planning across Canada and vertical planning at three levels of governance without that. We need more neighbourhood and government level indicators, which both Mr. Frojmovic and Ms. Steenberg talked about.
Tracking change over time is incredibly difficult when survey questions are not asked in the same way over time. Perhaps one of the biggest challenges is that there is not an engagement with those who will actually use the information. It is important to ask the same question over a period of time so that you can really track what that means and what the time series looks like.
There is little or no communication between the social development community and health community at the planning and policy level. You have two silos going on. There is a great deal of information at the social development planning level around what a good city looks like, and its relationship to healthy living and those issues of social determinants of health. They do not often talk to those people working in the health field. There are numerous models and practices across Canada to show that this intersectoral collaboration can be successful, but we are not using it to the fullest in Canada.
We also have organizational/departmental silos and few government/community partnerships where information is not shared transparently leading to cross-purpose planning; it is important to get on the same page and work together collectively. The other issue is no integrated government/community framework for collecting, organizing and disseminating data. It is not a government responsibility only. It can be a community/government partnership that would have a vast impact on the change and address the social determinants of health in Canada. Some of the recommendations that I bring to you from our Canadian Index of Wellbeing network are, first, Statistics Canada is obviously a well-funded government agency here in Ottawa, but it must be adequately funded so that it meets all people's needs. This is Ms. Steenberg's point around the fact that access to that information is not available to smaller community organizations in the community. They have to pay over and over again. You must address that issue.
Statistics Canada needs to take a more open leadership role in government/community partnership frameworks so that data users have strategic input into the types of data gathered. I commented on this earlier.
Statistics Canada and other collectors of social determinants of health data should be able to share their knowledge and show data users how to use and interpret the data.
In your Issues and Options paper — and I was delighted to see this — you talked about health goals and outcomes. That is an important strategy to look at tangible outcomes and goals, but they will fail if it is not embedded in legislation with targets and long-term financial investment and political champions.
The last recommendation I would share with you is to establish an integrated government/community, multi-level health and social development framework for collecting, tracking, organizing, analyzing and disseminating social determinants of health data.
Thank you for your time.
Dr. John Millar, Executive Director, Population Health Surveillance and Disease Control, Provincial Health Services Authority, B.C.: Thank you for the opportunity to appear once again before you. I am with the Provincial Health Services Authority in British Columbia. I have responsibilities under that authority for trying to improve the health of the population in British Columbia. I work closely with the public health officers in British Columbia and the British Columbia Healthy Living Alliance. At the national level, I chair the national advisory committee on the National Collaborating Centre for Determinants of Health. I work closely with the Chronic Disease Prevention Alliance of Canada and several F/P/T, federal/provincial/territorial, committees. The views I will give you are drawn from my experience in all of those realms.
I read your fourth report with great interest and am encouraged to see how it is going. I know you have asked me to comment in particular on the data and research areas, but those must be thought of in context, so I will take the opportunity to say a bit about where I hope you might go around some specifics in your final report. I know this is a preliminary report and does not have a lot of specifics in it, but I would urge you to consider, when you talk about some national strategies, that they include the following five topic areas at least. For those of you who are trying to follow this from my PowerPoint deck, I am starting more or less on page 4.
The first of the five areas would be looking at the issue of homelessness and affordable housing in this country. You know the extent of the problem. It is right across the country. There is a profoundly solid business case for doing something about that. There is huge support around that. The first one is homelessness and affordable housing, which is very much linked into the issues of mental health and addictions. These first three are all closely connected. The second area is child and family poverty. You know the issues around that. The third is around early childhood development and getting to some sort of universal access to child care. The fourth is around obesity. We have a huge epidemic of obesity in this country, and we need a national strategy on that with goals. The fifth is the issues around Aboriginal health. All of these need strategies, and the strategies need goals. As Ms. Slotek has said, the goals need targets, and the targets need measurements. That is the context in which I will now move to discuss data and research issues.
On the data front, we are blessed in this country with many large databases. You have heard about some of the issues around those. Certainly, in population health and the social determinants, there is much work to be done. One of the missing pieces is around good economic data and a good economic analysis because always, these days, any government or anyone in the private sector wants to see a business case. What does it cost to deliver a program, and what are the societal benefits and the payoffs? We are commonly hamstrung by inadequate economic data, and that gap must be filled.
Another issue is around data access. You have heard some of it targeted in particular at Statistics Canada. The issue I want to bring forward that has not been mentioned here today is around data access from government departments right across the board, federally and provincially, often stifling access to data under the privacy and confidentiality legislation. I am hearing people in the committees I sit on and the meetings I go to in British Columbia say that Canadians are dying because we do not have adequate data access. I am also hearing that it is not strictly because of the legislation, but that governments are using legislation as an excuse not to release data. We are suffering great inhibition in being able to link databases and conduct the research in the population health intervention area that needs to be done.
Another restriction that we have is around capacity to do the analysis even when we have data. With the Institute of Population and Public Health under John Frank, where I was honoured to be on the institute advisory board, there were great frustrations because the country does not have the research capacity to even use the data that we do have.
Another area that I would recommend for your consideration is the area known as economic microsimulation techniques. Again, Statistics Canada has considerable expertise in this area, as do many academic institutions, but it is considerably underdeveloped and underfunded in the country at the moment. It is a technique that allows us to make projections. It is something used routinely in treasury boards and finance departments, but it is not being used so much in population health. It allows us to estimate the input of potential population health interventions.
I also want to emphasize something you have heard from everyone, which is the need for local level data. Once again, the privacy and confidentiality legislation often inhibits the release of data at a very local level. We need to somehow get past that. Again, the resources devoted to local-level data are inadequate.
Let me turn, in conclusion, to issues around population health research. There is a terrific need and underfunding for population health intervention research in the country, including, as I mentioned earlier, economic cost benefit studies. If you look at the way the Canadian Institute for Health Information, CIHI, currently allocates its funding, the fourth pillar around population health is by far the smallest. It is a tiny fraction of what is still going into basic science and clinical sciences. This needs to be augmented.
The Chair: I thank all of you and will lead off the questioning. It seems that you are all telling us — and we heard this before — what we need in the way of a data capacity for evaluating population health and initiating change. We need a national data inventory. This must be community sensitive and perhaps I could go so far as to say community based. You are preaching to the converted. We have believed for a long time that we must get this organized at the community level.
Again, you have given us the litany of outstanding organizations when it comes to data, such as Statistics Canada and the new CIHI initiative, and the list goes on. They have been before us at least once, some several times, and are trying to be as helpful as they can be.
There is a tough question here that I would like all four of you to address. I am a big believer in networking rather than top-down control so that you can allow initiatives to develop and work together. However, there must be some coordinating body or force. We have been searching for that for the last while, and that was in our Issues and Options paper. Who can do this? I asked Michael Wilson the last time he was here if Statistics Canada could do this. I asked CIHI if they could do it. CIHI seemed to be the most optimistic group with their population health initiative. Some people, such as John Frank, said, «I think you need a new umbrella organization.» I would hope we do not but maybe we do. There are so many good organizations out there. If we could get them harnessed, I hope they could do what they have to do.
Would each one of you try to address who you think could provide the leadership? Who could provide the coordination to get the ball rolling on this data initiative?
Mr. Frojmovic: I will reflect on some things I have said and heard.
What will not work at this point is that Statistics Canada is in a bit of a conflict because it is earning a living doing things the way it is doing things. That has been part of the problem. It could play that role if its livelihood was not dependent upon it, but that does not seem to be the case right now.
The issue with bringing in an organization like CIHI does not address this wall between the health sector and the non-health sector that also must be overcome. Both those entities, Statistics Canada and CIHI, would be integral to what we are talking about. Each of them, on its own, however, does not address that.
Perhaps Ms. Steenberg can talk about what is emerging. As you have said, there are thousands of flowers blooming out there but they are not talking to each other. There are attempts at the grassroots level to convene these networks. Maybe I will use that as an introduction to what Ms. Steenberg will talk about.
Ms. Steenberg: To answer the question, there are two parts to what you are talking about doing. One is an operational part, which is maintaining the data and ensuring it gets out and is accessible. The other is a strategic role, which concerns what data should be there, how it should be captured, what should be acquired and so on, namely all the strategic aspects of making that data available.
With regard to the operational part, it could be Statistics Canada or CIHI. They have the infrastructure to be able to do the operational part of it with the adequate funding.
With the strategic part of it, however, I would like to think there would be something that I like to call the «national round table on social data and infrastructure,» which would be something like the national round table on the economy and the environment. It would bring together Statistics Canada, CIHI and all the major stakeholders around the table who could make the decisions regarding the policy that would govern that resource. As for where it is housed and managed, it could go a number of places.
Dr. Millar: Was your question regarding local-level data in particular?
The Chair: It must have a local capability. In other words, if we cannot organize this initiative at the local level, it will fail because of the diversity of the country.
Dr. Millar: That is being done. I do not know if you have heard about it yet, but Newfoundland has had it in place for years. There is the community social accounts process.
The Chair: Believe me, we have heard about it in spades. We have Senator Cook and Senator Cochrane from Newfoundland.
Dr. Millar: That has been replicated in Nova Scotia and we are now doing the same thing in British Columbia. I do not have the details about those other provinces but in British Columbia, it is on a GIS, geographic information systems, platform and is supported by the premier.
We have all the so-called dirt ministry data. All the economic development data are on there. We are in the process of trying to move the social ministry data in there so we will have all of the health, income support, education data and so forth in there. It will have all of that stuff on there and, at the push of a button, you should be able to get whatever geography you want. The technology is there. That is being coordinated in British Columbia by a consortium led by BC Stats which we are involved in.
Certainly, it seems to be very doable at the provincial level. Given that many of the important databases we want in there are generated at the provincial level, that may be at least one answer to your question — namely, get it done at the provincial level and then, to some degree, you can roll it up nationally.
The Chair: I see Ms. Steenberg shaking her head.
Ms. Slotek: That is what I was getting at with my last recommendation. I would concur with Ms. Steenberg that we need to get people around the table and across the sector. That will inform what that might look like.
Dr. Millar is right. It is happening, but it is not visible to all of us. If we put those people together across sectors, we could probably come up with an answer about where it needs to be vested.
Dr. Millar is right. The strategic place and where it is vested is another matter. I am not so sure that Statistics Canada, given its significant role in data dissemination, can do the strategy development but it can develop the data that is required.
The folks at community accounts in Newfoundland are part of our Canadian Index of Wellbeing network. If we had a community accounts in every province in Canada, it would give us some good best practices at that level to ramp up to a national level. It is brilliant and well developed. They have ironed out many of the kinks. It is worth looking at and considering.
The Chair: We are doing a site visit to look at it. It will definitely make its way into our report.
Ms. Steenberg: It is not so much that it should not happen at the provincial level. Alton Hollett's model is wonderful but it is not happening at the provincial level.
The second difficulty is that, when you get down to the neighbourhood level, that data cannot be released. Statistics Canada has data at that level under licence. It only allows free access to data down to CSD, census subdivision, level. These are census geographies. You have the following: A CMA, which is a census metropolitan area, a large municipal area; a census division, which is a city, a specific municipality within that area; and a census subdivision, which is smaller than a city but could be a county. You then get down to an area called a «census tract,» which is, in some cases, as large as a neighbourhood but usually a bit larger. They tend to be stable geographies of about 50,000 persons; they are only available in the larger cities and you have subsequent smaller ones than that.
Statistics Canada makes some data available at the census tract level but if you are getting down to anything smaller than that, you must pay for it. It is under licence, and you can only share it with the people who share that licence with you.
Therefore, Alton Hollett's thing is fine but none of his communities are at the neighbourhood level. None of them are below the CSD level. That is one of the difficulties with that model. It is a wonderful model, but it will not serve the municipalities in the way that Mr. Frojmovic and I were speaking about.
Mr. Frojmovic: Things are happening in certain provinces, but if we are to wait for all 10 and the territories to come with a coherent system that we can all use locally, we will probably be waiting a long time.
We talked about the ability to use maps and start visualizing data at a neighbourhood or city-wide scale. It is a powerful and analytical tool. That kind of technology is accessible right now. You can have a single point of entry for the entire country where you can drill down to within a neighbourhood to a block, if you want, with the data that comes out of the census. The census data exists and is available.
The Senate could acquire the entire geography for all of Canada, all the census data right down to the block level, put it into a mapping tool, which would not cost you much, and you would be able to sit on an incredibly powerful repository of data.
Moreover, if you could go to the 10 provinces, you could get their health data coming out of hospital admissions data: Why am I coming into the hospital, when am I being discharged, why am I being discharged? You have my postal code and street address and you can map that. Taking those two sets — namely, health data out of each of the 10 provinces and the census — and putting them into a single mapping portal, any one organization in Canada has the capability to build an incredibly powerful analytical tool tomorrow.
The issue is not about whether we have the technology and some of the tools. They are all there. We need someone to take the lead to force those together. That is all that is needed — namely, get the organizations to sit around the table and use the mapping and the health and social data. It is all there but it is a matter of someone taking the lead to pull it all together.
The Chair: We have only one hour left. I must stop here because the other senators want to interface with you.
Can CIHI do it? Can CIHI take the lead, namely, the population health initiative?
Ms. Steenberg: Yes, if it is prepared to pull around the table. It does not matter who does it as long as they have around the table the people who need to be there, which are the data users and providers.
The Chair: And expand what they are doing into the social services area?
Ms. Steenberg: That is right.
The Chair: Thank you.
Our next question will come from Senator Eggleton. For those of you who do not know, Senator Eggleton was mayor of Toronto for quite a long time. He never did get a tunnel built between the Royal York and the airport.
Senator Eggleton: You found that out last night, did you?
The Chair: He is the chairman of the Standing Senate Committee on Social Affairs, Science and Technology. He is also doing a parallel study to ours on the cities. We frequently cross over into each other's hearings because we have so much in common.
Senator Eggleton: Thank you.
I want to explore a couple of things a bit more here. When we talk about data, Statistics Canada gets most of the attention and discussion. Dr. Millar, you said there are other sources but the problem is that there are barriers. How do we remove the barriers? How do we begin to deal with that?
Dr. Millar: That is a great question. People have been talking about that for some time. There is this tension between the public's drive for protecting their privacy and the system's need for access to the data.
When I was at CIHI, we had repeated conversations with Statistics Canada, with CIHR, Canadian Institutes of Health Research, and others about what the solution was. One was to first of all get an inventory. The inventory has been done, at least around health databases. We have an inventory.
The next step was always to somehow promote some public dialogue across the country so that people could understand what they were losing by that balance between if there is too much emphasis on privacy and not enough emphasis on access. That public dialogue has never taken place, and I believe that is something which may be needed to get some public support for loosening up these data.
Senator Eggleton: Mr. Frojmovic, I am interested in what you are doing for the Federation of Canadian Municipalities. You have been doing it now for 12 years and you have 22 municipalities. I note some of them are regional and some are local, which means they do not all necessarily have the same interests in terms of their jurisdictions. Maybe you can talk about how you overcome that.
However, I wonder what results you have produced for your clients. You have 22 municipalities signed up to this. What have you been able to produce in terms of outcomes dealing with the social determinants of health?
Mr. Frojmovic: In terms of outcomes, what the project is trying to do is twofold. There are two users and one is the Federation of Canadian Municipalities itself and how it interacts with the federal government and tries to convey clearly messages around certain needs, whether it is infrastructure or homelessness or housing, and being able to rely on empirical data.
Clearly, around that use, having access to data that gives you trends from 1991 to 2006, now for half of the population that has been effective. In terms of the outcomes, I guess that is a measure of how effective FCM has been in working with the federal government to accomplish those objectives. The other user would be those 22 municipalities, and it is a mix of municipal types.
For those who are familiar with the world of municipal government, there are cities like Vancouver, which is half a million people but operating in a Greater Vancouver Area, which is substantially larger. You have regional municipalities like Niagara, which actually is responsible for 12 lower-tier municipalities. They do have different interests, but their interests converge around the fact that they do represent relatively local sub-provincial needs. Their use of these data, other than simply encouraging FCM to represent their own interests, is simply to bring it in-house.
I have had anecdotes from municipal staff saying we are able to talk to our councillors about homelessness in a way that was based on these actual numbers, both for their own community but also putting their community in the context of all these other cities. When the Halifax regional municipality council is hearing about what is going on in Halifax and then comparing that to places like Calgary or Edmonton or Hamilton, the reaction, I was told, was quite different from the usual stories about homelessness.
The example of homelessness is interesting because there is a federal government initiative to measure homelessness by looking at emergency shelters across the country and collecting data. It is called homeless individuals and families information system, HIFIS.
It has been struggling to work with these thousands of shelters to collect administrative data. What FCM does is work with municipal governments that have a working relationship with a lot of the shelters and have a reporting relationship with them, and are able to report at a relatively simple level of what is going on in the emergency shelter system for that community.
The outcome is trying to understand in empirical terms what is actually occurring at a municipal level when a lot of the data out there is not talking about municipal government. They are talking about CMA or a province. It has been helpful at that level. It is one of the tangible products. Annually, there was some kind of thematic report. There have been five to date over the last four years. The most recent one was on housing and homelessness. These reports try to pull out the key issues and trends that affect urban municipal governments, and compare each to what is going on within that community of urban municipal governments and also how it compares to the rest of Canada. The next one planned for release in the fall will deal with immigration.
To answer your question, it just brings some empirical evidence to otherwise fuzzy discussions and enlightens council in some cases, and offers the Federation of Canadian Municipalities some data to work with their federal government counterparts.
Senator Eggleton: You would bring Statistics Canada data in, but you would also bring in data that you get from the municipalities.
Mr. Frojmovic: Right.
Senator Eggleton: You have a rather unique blend in doing your studies.
Mr. Frojmovic: Yes. We are relying on, in this case, an on-line municipal data collection tool as we call it, and the challenge is, because municipalities collect data in 10 different provinces, they are each mandated to do different things. They will define any number of things wildly differently. We have to work with the lowest common denominator, in effect. Using the recreation example, in Regina, if you want to understand how much it costs a family of four to get access to municipal recreation facilities for a year, some cities do not have one-year memberships, others do. Some have access to all facilities. Others have access only to swimming pools. You have to come up with a common denominator for measuring quality of life or determinants of health for that matter. That is whether it is recreation or homelessness or a wide suite of things.
Senator Eggleton: Do you look at neighbourhoods, too?
Mr. Frojmovic: The Federation of Canadian Municipalities does not, but we have had ample discussion going with the CSDS about how straightforward it would be in many cases to roll out the same indicators at the neighbourhood level using maps, of course. The capacity is there. Many individual municipalities do independently of this project, Toronto being on of them. Toronto is a wonderful partner.
Senator Eggleton: When you are looking at poverty, housing and homelessness, those kinds of issues, I think that is helpful.
Senator Cochrane: I do not know if I have a question, but we have heard a lot about collecting data and not enough data, and Statistics Canada's problem and so on. There must be a solution. We know we have problems coordinating everything but, Michel, maybe you do have the solution. Would you elaborate more on what you were saying about this solution in regards to consultation with municipalities, with provinces, with the feds, whatever?
Mr. Frojmovic: I am glad you think I have the solution.
We talk regularly about these issues. The point I was making was that the technologies for things like producing a map showing every single neighbourhood in Canada, are terribly accessible. They are not expensive. You can grab any student off the street and they will know exactly how to use it if they come out of a geography department. The data needed to put into those mapping tools are collected religiously by organizations like Statistics Canada every five years. We have health data collected daily. There are all sorts of systems in place among regional health authorities across the country and among provincial ministries of health about how those should be collected.
The data is out there, the tools to analyze the data are out there as well, but clearly it is not all coming together. Issues of cost are one, issues of privacy would be another, and there are simply issues of trying to break down silos.
The one limitation of bringing in an organization like CIHI for those on the social side of things is that CIHI has not been designed to communicate with us on that side of the fence. They would need an entity to push them along. At that level, the federal government plays that kind of a role. I do not have the answer but so many of the tools and systems are out there waiting to be used.
Senator Cochrane: Could Statistics Canada do that?
Mr. Frojmovic: Not on its own. It could not play the lead role in the current configuration of things.
Senator Cochrane: I know where you are coming from. It is a government department.
Mr. Frojmovic: It is not because it is a government department.
Senator Cochrane: No, but some may think so. There are restrictions on employees with government and so on, but someone must take the bull by the horns and do it.
Mr. Frojmovic: It will not do that. It is not designed, at this point, to take that bull by the horns.
Senator Cochrane: Does anyone have another suggestion?
Dr. Millar: In reality, in our lifetimes we will probably never collect population health data at the local level in areas in which we are vitally interested, such as how many people are smoking, whether people are getting enough exercise, and information about their nutrition, weight, BMI, body mass index, et cetera. That data is hard to get. We rely on surveys for that and survey technology is demanding. To get accurate data down to very small geographies is getting increasingly more difficult, because you must phone people or visit them to talk to them. People just use cell phones now and those numbers are not in data banks. Many people do not answer the phone or will not participate in a survey anymore.
We are at a point of acknowledging that, for survey-type data, we will probably not get much below a local health authority level, which is a rather large geography. There are some realistic constraints on how much data you can get in certain areas.
Ms. Steenberg: I would like to make three points in response to Senator Eggleton's question and in response to your question, Senator Cochrane.
The first question is why it is not being done. We know the data exists. There are a couple of reasons. One is a technical issue of compatibility. Since everyone is collecting in their own way and they are not talking to each other, the data simply is not comparable across jurisdictions. They are collecting the same data, but they may be doing it slightly differently, so you simply cannot consolidate. That is a practical issue and is not the most difficult in and of itself.
The second issue is ownership, and this applies not only to the community and research sector but also within government departments. Indicators are big business right now. Everyone has indicators. They are a hot topic. Everyone's budget depends on having an indicator project and they are not all that keen on sharing.
CIHI is currently developing its portal. HRSDC, Human Resources and Social Development Canada, is developing a similar portal. Neither of them currently has anyone from the community on their development team or their committee. We know the committees exist and we have suggested it is important that they have input. However, that is the reality.
Another rich source of data is administrative data, to which Dr. Millar and others have alluded. The Canada Revenue Agency, CRA, has an amazing amount of data that can be disaggregated down to the household. They have all sorts of data about where you work and what you do.
I believe you have spoken to Michael Wolfson from Statistics Canada who said StatsCan could function as the Swiss bank of that kind of data. They could do the organizing, rationalizing and all of that. They cannot take the lead for reasons that Michel has suggested.
Finally, I will go back to data at the neighbourhood level. Part of the problem is that we do not understand the data sources in the same way. You have the census data that allows you to do demographic profiles down to the neighbourhood level. At the same time, Ontario has recently put in place a large educational database that has data on students down to the individual student level, and the progress of every student is marked in that new database, which is still coming online, and will have all the characteristics of that student's development and progress.
You can take that, which is obviously disaggregateable to the neighbourhood level, look at your neighbourhood profile, look at the school performance of children at different age groups, and see how they correlate. Are there issues? Do similar types of profiles produce similar types of school readiness and school performance? We know that is what the early development index tool is doing. It is trying to measure school readiness and compare that with neighbourhood effects.
As I think we have all said, the data is out there. There are all sorts of people who could do it. It just needs the political will, and the political will has been lacking to stand up and say that we must have a national data strategy that gives every department and every government a place to hang its data initiatives, and to say that this is what it will to have to do.
Ms. Slotek: We have spent a lot of time emphasizing what is not there by way of data. We are also saying there is a myriad of data. One might ask: So what? Why would you keep doing it? Ultimately, you have to move away from the data and think about national goals and what the end game is. Do we care about poverty? If we do, we set some goals and outcomes around what we do about it, and then set a course to gather the data.
Through the consortium, we have been talking about being strategic about what we ask for. It cannot be a wish list. We could have 25 different indicators we want to look at but, at the end of the day, we need to get together around a cross-sectoral round table to determine what the end game is, why we are gathering the information, and what tangible benchmarks are there to meet goals and objectives. The data informs that so that we can produce solutions.
You have to step away from the data first and then think about overall national goals. Without those overall national goals and objectives, we do not really have an end game. We do not have a sense of direction or a sense of vision.
That is disturbing at many levels. Canadians get this. You say in your Issues and Options paper that people do not understand social determinants of health. They do understand social determinants of health. They may not know where to get the data, but they can tell you in lay language what they think, and they do talk about vision. They talk about national goals and national objectives and about cross-sectoral engagement because they are doing it in their local communities. They see it as a best practice that can be done horizontally and vertically in Canada. It is possible.
Mr. Frojmovic: On the notion of a solution, there is a great one although you will make a lot of enemies implementing it.
We are sitting on reams of data and the technology is accessible. Local community associations or residents' associations could set up a little portal in whatever office they are using and could have access to all the data and mapping tools they need.
As an example, in the U.S., banks were mandated to invest in local community development. Banks were not particularly keen to do that and they were not doing it prior, but they had access to lots of assets and were mandated to do that. Forcing organizations to make data available would certainly free up some data sets.
There is one other set of data I have been curious about but have not pursued. You mentioned the difficulty of looking at smoking patterns at a microscopic neighbourhood level. I imagine that the tobacco industry, with their data, might have the best handle on who is smoking where in Canada. Banks and insurance companies know a lot of stuff about what is happening with social determinants of health at a neighbourhood level, or perhaps lower.
There is no incentive in place for any private institution to make data available to those who need it. They have their mandates. They do what they are required to do with their shareholders and other constituents, but a mandate would be required for sharing. You could mandate the provincial authorities, the national government departments and the private sector entities, all of which have data, to report on the social determinants of health at the local level. You could empower a network of 10,000 community associations to look at what is going on in their neighbourhoods and to harass their city councillors, MPPs and MPs to do something about it. It is all doable, but it does require a mandated direction, a requirement to go forth and share.
The Chair: Thank you. I do not want to distract you from the subject, but I want to talk about the idea of getting the private sector turned on about the cost of not doing something about the social determinants of health.
In other words, the private sector has to deal with unhealthy employees who are costing them a lot of money and so forth because they are not productive.
I do not want to lead you astray. Maybe we can get you back another day and you can think about that.
Mr. Frojmovic: I wake up in the middle of the night worrying about these things.
Senator Trenholme Counsell: Thank you for a stimulating presentation. I will ask about early childhood development. I always underline where it is mentioned, and it is certainly mentioned frequently in these presentations.
Since I raised my hand, a number of concepts have come up — national round table, national data strategy and national goals. Each one of those rang strongly in my ear. Those are good things. I will not ask about those, but I think it is important that you have raised what I call key national features of what is necessary in terms of data and population health.
Often, we think we can look to another country as an example from which we can learn, perhaps visit, and model ourselves after. I do not think I heard today about a country that is perhaps doing a lot better than Canada — maybe nobody is.
I wondered about that, whether there are outstanding examples of the management and coordination of data and putting it to use. To me, it is all about putting data into action. It is no good unless you put the data into action at all levels. I will ask you to comment on what I have said.
I worked in public health for six years altogether — three in New Brunswick and three in Ontario. I have quite a good understanding of how public health works. Public health and population health are really the same.
You are talking a lot about getting this national data from the census data and other measurements down to individual communities. There is merit in that but I think you need leadership at your federal and provincial levels, and then mayors and councils and so on will identify how they can put this into use. I was thinking about local medical officers of health and public health nurses and social workers and so on in this context, because really they are the people who do it.
Toronto probably was quite different under His Worship's leadership. Really, I know what town and city councils have to deal with. A lot of this really comes down to your medical health officers, public health nurses, social workers and all these wonderful people.
I thought that probably, rather than putting this right down at a community level in terms of action, you have to have the federal and then the provincial governments recognizing that communities would be encouraged to do certain things, take up certain measures. I saw it more as a federal and provincial responsibility involving the structures I have mentioned.
I do not know whether there is any question in all of that, but perhaps you would comment.
Ms. Steenberg: If I understood part of what you were saying, it had to do with the significance of the needs of regional officers of health for these kinds of data.
Senator Trenholme Counsell: Yes.
Ms. Steenberg: As Ms. Slotek and Mr. Frojmovic mentioned, there are a number of networks out there, such as social data user networks or social health data networks, and they are all starting to come together. There is a network called the urban public health network. I am sure you are familiar with this. It is led by Dr. Cory Neudorf, who I think is chair of one of the Public Health Agency of Canada councils.
This urban public health network is doing exactly that. It is a network of regional medical officers of health. They are doing two things — encouraging the production, acquisition and dissemination of more data at the local level, and they are also trying to produce some core indicators around tracking public health. Social determinants of health and public health, as you say, are the same thing.
That network does exist, and certainly we are all working to the same ends. I am sure if Dr. Neudorf were here he would be saying many of the things we are.
As we were talking prior to getting our presentations ready, one of the people on our call was Dr. David Strong, who is part of Cory Neudorf's network. He works at the Calgary Health Region. He was helpful in terms of informing our discussions and in bringing forward some of those issues to you. I just wanted to say we are conscious of that and try to work together.
You asked whether there is another country. One country that has done a great deal to make local data available at the neighbourhood level is the United Kingdom. They have, over the last 10 years, significantly changed how their national statistics agency produced, disseminated and organized data. They have a huge amount of data available down to the neighbourhood level.
That was an exercise of political will, in part because they had the strategy coming out of the Prime Minister's office, but also because there was pressure from the community, academics and researchers to make that data available. It was the convergence from the bottom and the top that has significantly changed. It might be a model that you would want to look at, although we recognize it is a unitary government and not a federal government.
Ms. Slotek: The other example internationally would be New Zealand. I cite it because they started with an obligation under legislation to do a report card. There was a political will, a national obligation to share information about moving towards well-being or away from well-being. They focused predominantly on looking at indicators around poverty and disparity, again legislated with report cards expected on an annual basis.
Mr. Frojmovic: I will give a third example of a country, which is the United States. I will contrast the U.S. and the U.K. The U.K. took a centralized top-down model where they made local data available. The deputy prime minister's office was a repository of all this information. The treasurer was behind it. At the most senior level of the country, there was a call to arms: We need to have data that is relevant locally. That was all centralized, made very accessible and relevant at a local level.
The U.S., maybe in some ways, is the inverse where data is much freer in Canada. What you see in the U.S. is this proliferation of community-based groups who get access to data and are making data available at a neighbourhood level.
It is a bit of a hodgepodge. Some neighbourhood networks do it better than others, but in the U.S., the trigger seems to be you can get access to data that is much cheaper. If you want to do one thing, just data coming out of the census for example, we will cover that. That will be the Government of Canada. We will foot the bill. You will see a thousand flowers blooming, at that point, in a dramatic way. It will be expensive, but will be the single most significant thing that could be done. The U.S. and the U.K. are two very different models. Both have the effect of making locally relevant data available and accessible.
In relation to federal-provincial and sub-provincial responsibilities, you mentioned the need to strategize. The homelessness sector has relied increasingly on municipal governments to coordinate at a local level a range of organizations to come up with a strategy. What are the priorities in our community? What is important and how do we move forward?
Provincial and federal governments have a role to respond to, but in terms of setting priorities and understanding local realities, it is municipal governments coordinating local groups. The same can be said for health priorities, whether it is regional health authorities or municipal governments setting the priorities in terms of how we move forward.
Those priorities then are often implemented provincially and federally. However, to set those priorities, you need access to locally relevant data, which brings us back to the issue of how to get access to that data. There is clearly a role for local-level institutions, whether it is health authorities or municipal governments, in pulling together local consortia to come up with strategies and priorities.
Again, if the data was made free tomorrow, all sorts of tools are available to bring about analysis at a local level.
One level is just expensive. There are other issues, too, besides cost — that is, the census. There are issues of access to administrative health data and to the private sector administrative data, but clearly there is the issue of cost.
If you went to the U.K. and the U.S., there are two different perspectives. They both offer good models.
Dr. Millar: The theme that emerges is political will.
In regard to your question about local health officers and so forth, to tell you a little bit about how it has worked in British Columbia, we recognized this problem of local data access four or five years ago. We have formally constituted a coalition of health officers, but working with those from other sectors such as education, agriculture and the Union of British Columbia Municipalities. We have a large coalition of people who get together provincially, which has led to this capacity where we now have to recreate something like the Newfoundland community accounts process.
The mechanism is a coalition. It happens that that coincided with the premier's desire to get more local-level data as well. It started with economic data but then added in the social data. Where his political will came from I do not know, but it was important in driving that process.
Certainly, from what I know about Newfoundland, it was again because of the social contract there, and similarly in Nova Scotia. Playing that up to the federal level, I would imagine that what will work best would be CIHI playing with others: Statistics Canada, CIHR and some of the other major NGOs, non-governmental organizations, at the federal level that could come together and, hopefully, generate or hold hands with whatever political will comes out of it.
Senator Brown: I want to ask a question of Dr. Millar.
You may already be doing this, but I wanted to see if it could be expanded. Why do the names and addresses not disappear and become a code, numbers? Depending on how long a binary code you want, you should be able to assign numbers for gender, race, age, income, address and keep all the personal data, in terms of name at least, and anything else you want to keep out of the public realm. You could then ask that legislation be passed that would have the Canada Revenue Agency and any other agency, whether it is the health agency or whatever, assign the code to their own information but allow you to have the template with the numbers, but without the personal name and address attached to them.
You could then go from agency to agency. Legislation could even require them to provide that coded information. You might need a quantum computer by the time you got through it, but you would have it from every source imaginable, whether from health organizations, hospitals, insurance companies, the CRA and so on. If they were all required to use their own code and just give you the information with numbers instead of names or addresses, it seems like you could have a wealth of information, and at no cost, other than putting it in your own program.
Dr. Millar: You are probably correct that there are technological solutions to getting around some of the concerns about identifiable data. As an example, most government departments will not release any data that has a six-digit or maybe even a three-digit postal code in it. Even if you stripped everything else off, the concern is that with that minimal amount of information, there might be so few people that if one person in that small jurisdiction turned out to be HIV- positive or something, then everyone would know who it was. That is the kind of tricky balance that must be achieved here.
Having said that, there are technological ways of stripping off all the identifiers in a secure environment so that you can link that up with other databases. There are ways of doing it, but it is often labour-intensive for government departments to do this kind of work and create those databases, so it often does not get done.
Senator Brown: You used the example of postal codes. What about giving a code for the postal code and having the agency involved design the code so that they are the only ones who can actually access the template from their own information? You then have a double protection there because you have them protecting their own information. At the same time, they are giving you everything except the identification of the one person with HIV in the small village or whatever. That is what I was getting at, that there be codes for codes.
Dr. Millar: You are correct. That can be done. Again, the way the system is currently set up, you tend to create one linked database and it is for a particular purpose, one research project, and others cannot then access it. There are some challenges there.
Senator Brown: I understand what you are saying in terms of the challenge. I agree that certainly there would be a challenge. However, if each agency was able to preserve its own information with anything except what you need — which I understand would be gender, maybe race, income — addresses would disappear and everything that could be identified with an individual, or even in that particular area of a province, would disappear. They would maintain that for themselves — even the insurance companies, which are always running charts on age, health and everything they can possibly get their hands on.
It would seem that, if there were enough codes in there, the insurance company could be guaranteed that their information would not be personalized and would not be able to be tracked back to individuals, then you would have the information but they would be protected.
The same thing is true for the Canada Revenue Agency. They are required by law to keep certain things private. However, if there are enough codes in there, there is no way to access it because the agency itself puts the codes on. All you would get is the information and access to that information. If there was a code for your information, then it could not be traced back.
Dr. Millar: To give you a real example of the problem here, something like what you describe has been done at the University of British Columbia. They have created a big database that links all of the ministry of health databases. They do exactly what you describe, namely, strip off the individual identifiers. Then the information is made available, but it is made available to the University of British Columbia researchers.
If there is someone like myself in a health authority who wants to obtain that data on a linked basis for, say, quality improvement in the health care system or to understand a local population health issue, we cannot gain access to the data because that whole process has been created and is owned by the university, and they put priority on their research needs. What is more, they take a long time to create that database and get it up to speed. If we have a real time problem in population health, their data is usually three years old so it does not tell us anything useful. Do you get the sense of the problem here?
Senator Brown: Yes.
Dr. Millar: We have a big job ahead of us. It is not insoluble.
Senator Brown: I understand the complexity of it. Legislation that protects the Canada Revenue Agency information could be designed to give people like you the right to access it because it is in the national interest. Each agency could be required by law to provide you with the information, coded in a manner in which you can only use a certain part of it and never be able to get the names of the individuals or where they live, or whatever else they need to have isolated out of the database that they have. The legislation could actually require that.
Dr. Millar: As Mr. Frojmovic was saying, we need legislation to encourage people to do that kind of sharing.
Senator Brown: That was the legislation I was thinking about.
Mr. Frojmovic: To reinforce that point — any time you ask anyone who works with data whether they can do something for you, it is labour intensive. For a small request, you will literally spend days and days if you do not have a mandate to do that, unless you really like the person and do him a favour, which often happens. Municipalities will often turn to universities and quietly gain access to data they are not allowed access to, and report on it. It is the underground data economy, which is very healthy.
There is an incredible inefficiency going on about probably thousands of organizations working with the exact same tables doing all sorts of wonderful work. However, if you created a nice, streamlined system of data access, you would throw tons of students out of work. There are a lot of people earning a living doing the same things across the country. There will be a lot of resistance to doing that. It is like turning a messy highway that has thousands and thousands of vehicles and tons of taxis going to the airport into a train system. Someone says, «We will offer you one neat train system to the airport.» The whole taxi system will freak out.
We want the UBC data. All that work should be available to the whole country. It should not be stuck in one university. How do we address that? You do not have to convince anyone if you are mandating that it be shared, but the resistance you get is that there is a whole raft of people creating an industry, both legal and illegal, around this whole inefficient data business. However, it is doable. You can have efficiencies.
Ms. Steenberg: I will second the underground data.
Ms. Slotek: Notwithstanding the problems that Dr. Millar and Mr. Frojmovic addressed, when you get people around a table there is a great potential to get to that bottom line about what the strategies are and a beginning point of how to share data. If people are not talking to each other, they are not likely to take a look. The whole issue of ownership should be addressed. Who owns it? We never ask that question but it should be asked. Everyone owns it. There is a way to get that dialogue going if we get the people around the table to have that conversation.
Ms. Steenberg: I want to add something about the model and about the community. We talked about a national strategy but not the way it goes down to the community. Each local consortium of the CSDS is exactly a mini-round table. It starts out as kind of a transactional initiative to purchase data but it has ended up being a forum around a table whereby social agencies, health agencies, educational agencies, police agencies and libraries share their information and research and undertake common initiatives as they are doing increasingly in places like Calgary. It is already happening locally as we have all made very clear; we need to get the data to them.
The Chair: It is interesting you say that, Ms. Steenberg, because it is quite obvious that, for a population health initiative to be successful, you must get all the people who control the determinants of health around that table at the community level and then you have to wire it. You must then get the data up to the top or have someone from the top come down to do the wiring, or whatever, and be ready to share it all across the country.
If I am wrong, I want you to contradict me. I am pushing the report in that direction.
Senator Cook: Thank you for another complex afternoon of testimony.
From my limited knowledge on this topic, it seems that we are really good at gathering, at getting stuff, and at keeping it. How does one get to use it? Let me elaborate a bit on that. As the chair said, I am a Newfoundlander. We will be going to our province. I have had a number of meetings. I have come at this with no knowledge or understanding. At the first conversation I had, I learned that the community accounts were free and they were on the web.
I am sure that, just from hearing the four of you learned people this afternoon, this data collection must come at great cost and patience. We all seem to be going on a 16-lane highway or something. How do we get it together? Who will use it? How will it be accessed? To go back to the political will aspect, surely every one of us wants to have a healthy, productive population. My premier is no exception. That was the motivating factor. There was also an indicator: The failure of our fishery that we had existed on for 500 years. I will not minimize it. Ours was an easier-to- see phenomenon. The fishery was not coming back. We had to look at the population. In the first year, 30,000 of them moved to Alberta. That became a glaring reality. Maybe that is where our premier's political will came from. That is the simplicity of what happened at home.
My researcher pointed this out to me because I know very little about computers. I know what I would like it to tell me but I do not know how to get it. I was born and raised in a small fishing community. My researcher clicked a button and told me exactly the health, social and all the determinants of health in my community. The man with whom I had my first interview, who must be pretty smart, said, «We have all this data together but we are afraid to use it. We know we must do something. We will go out and test it.» So they went to a community and showed the profile. They did the presentation at the local Lion's Club and everyone came. People came to him and said, «We did not know we were like that. We did not know our community was like that. There are some things that we can do ourselves.»
Forgive me, but I will never understand the issue of the complexities of big cities; I do not come from that jurisdiction. I could see the user there but, in our presentation, we hear about data collection and the barriers to it, for example, that it is three years old and so on. I am thinking that ours is done on a regular daily basis and it is accessible. Our little group has gone to Australia and to Turkey, two very different jurisdictions. Is there some way that we can have a meeting of the minds and get on with this and care for people?
Ms. Steenberg: We need to clone Alton Hollett and put him in every province and territory.
Senator Cook: I will be the first to say that it was a really identified need. He had the political will. He put it in legislation and funded it. He said to the people, "We will be accountable to you through the legislature.'' I think that is where we need to come from and then all of this wonderful stuff will be of value. We are in the middle. I would like your opinion on that.
Mr. Frojmovic: I am not sure exactly how to respond but I am definitely a city boy. As complex as cities are, they are made up of communities — that is, neighbourhoods where people are struggling with things that are affecting them. I grew up in Montreal and now I am living in Ottawa. For example, school closures have been a big issue in Ontario. Speaking from the point of view of residents who are struggling to keep their schools open, school closures are very much about social determinants of health. Access to a local public school is an intermediating determinant of health. School closures tend to happen in lower-income neighbourhoods. There is a lot to be said about the school closure debates that occur in my community and the linkage to it as a determinant of health. What I found to be frustrating was the unnecessary lack of access to useful data on the part of those same parents who were investing an incredible amount of effort to fight for their schools to stay open. The kind of data needed was about population trends in particular. The arguments being made by the school boards on the one hand were, "Obviously, we see here there are populations in decline; there are fewer households.'' Cities have their own data sets and their own official plans that call for bringing more people into these neighbourhoods which is not in sync with where the school boards are at. Residents who have access to no data are struggling because, intuitively, they know that if their children can walk to school and it is a decent school in their neighbourhood, that is a good, all-around thing.
What I find interesting is that we have the capacity and tools and technology to get those data into the hands of residents in this case and bypass all. Keep the school boards honest about their relationship to the city officials who are trying to promote schools staying open. There is an incredible lack of access to data.
I was born in 1969. I have always regretted having just missed that revolution. I do think we are on the cusp of a social data revolution, and maybe one factor that underlies a lot of what we are talking about is fear. There is a fear on the part of many officials about making data available. The fact is, data can be made incredibly available and accessible to an incredible number of people. My experience has been, whether you are talking about municipal, federal government, provincial government or school board officials, there is a fear that if everyone found out about what I know, somehow the world will fall apart. The world will not fall apart; it will just get better and more efficient. The only way to overcome that fear, again, is to drive the requirement that you must make it available.
The reason we are on the cusp of a social data revolution is because we have all the data and tools that are out there, but they are being held extremely tightly; it is being sat on.
The fact that you could sit in some remote fishing village in Newfoundland and look at incredibly powerful data — exactly the kind of stuff that probably could have been used in any community going through a school closure — is testament to the fact that the only issue here is that certain jurisdictions are fearful of making that available. How you overcome fear, there is only so much we can do on the ground to overcome that.
The Chair: The full panel wants to comment.
Ms. Slotek: I am eagerly waiting to say something. I am delighted that you brought us back to the community accounts. We talked about it earlier. You are always looking for that magic bullet to find a solution, but there are eight or nine things that they are doing right. First, it is free. We cannot say enough about that.
There is an attention to users, which relates to my comment earlier about looking at the end game. What is it for and answering the «so what?» question; they do that very well.
There is a public engagement process. They talk to communities, and they talk about what is relevant. If you talk to Doug May, Professor, Memorial University, one of the things he talks about is engaging communities about mistakes at the front end. The community was up in arms saying, "You are doing some of this wrong.'' They listened, responded and changed it.
It is also building a partnership between Memorial University and the Newfoundland and Labrador Statistics Agency, putting different people with different vantage points around a table to come up with something different.
They also understand the relevance of the data and that relates back to users. They collect relevant data. It is not a lot of data, yes, but it is not about volume; it is about relevance.
There is a political will there. You talked about it more eloquently than I can, and they do understand accountability. It is the fear factor that Mr. Frojmovic talked about. The fact is they do understand an obligation by government to the people to share information collectively and set a course of change. They understand that clearly and not just at election time, but as an ongoing process that they have with their citizens in terms of providing that information.
The Chair: Thank you, Ms. Slotek. Dr. Millar, I believe you are next.
Dr. Millar: The subject of fear has come up, fear of releasing data, but there is this countervailing fear of loss of privacy out there, so I will go back to what I said earlier about the need for public dialogue.
Commenting on your question here, why can we not do the same thing across the country to get local-level data accessible? Newfoundland has invested millions of dollars in this. Because they have done it and have been so open about sharing it with everyone else, it makes it incredibly cheap to spread. In British Columbia, we need only $600,000 to replicate what they have done. It is not expensive.
The other big «but» here — and Ms. Slotek mentioned it a bit — you need more than just access to data to make this stuff work. There must be someone at the community level that can figure out what to do with this. You need that capacity to understand and analyze data and make it useful. You also need the engagement process so that it is not just in the hands of city council but you can engage the more vulnerable parts of the population as well.
It is doable. For relatively little money, this could be replicated.
Ms. Steenberg: Most of my comments were covered by the other panellists. You talked about two points — who will use it and how do we get it together?
In terms of using it at the community level, a number of examples have been mentioned. The one I spoke about concerning the early development index or early childhood education is one I find most widespread at the moment and growing in popularity. It concerns taking a look at a neighbourhood and at childhood readiness for school and then being able to compare neighbourhoods with similar profiles but with different outcomes in terms of readiness so that they then go back and say, over and above the demographic profiles, what are the differences in these neighbourhoods? That is where you come to looking at assets, which you will not get relevant data of from the census. You will have to get data from local sources, and you need it to be very particular and very specific to that area.
Basically, all of these people, anyone using this data, are using it to say: What can we do to make things better? Given this, what worked here? Why do we think it worked there? Might it work there? Did it work here? How do we know it worked? Was it the right thing? All of these questions are what you need the data to answer. Those are the users at the community level.
Finally, the capacity question that you raised is important. That is why the community social data strategy is what they call a data liberation initiative with two objectives. One objective is the transactional thing about getting the data; the other is teaching people how to use the data. Municipalities have the most sophisticated data users probably in the country at that level. They are also enabling the community to learn how to use data and how to do analysis.
Senator Pépin: It is an elimination process.
Ms. Steenberg: Exactly.
Senator Pépin: If I understand correctly, we need someone to do the coordination. For example, if the federal government had the political will and used money to help all the provinces and the municipalities to say, "Let us get on with it and everyone collect the data,'' someone must do the coordination and collect the data, distribute it and have people working together at one level. This is very important.
Right now, we have the municipalities, some provinces, and I think it would be interesting if the federal government had some input and distributed money to help them run it in a better way. It seems that it is quite expensive to get this through Statistics Canada. Also, there should be a board to coordinate everything and stipulate what is the best thing to do. That is what I understood.
The Chair: We never have enough time on these panels, and we are out of time again.
One of the groups we did not mention was Infoway. I am sure, Dr. Millar, you were involved, as I was, in the birth of Infoway. For three years, we sat on a panel. They do have financial resources. Although we are a bit over time, I will entertain Mr. Frojmovic's intervention after this. Please go across the board and tell us how you think we might engage Infoway.
Ms. Slotek: I cannot comment because I do not know about that particular initiative.
Dr. Millar: Infoway is $2 billion to essentially stimulate the creation of an electronic medical record across the country. It brings together the various clinical databases, diagnostic imaging, labs, doctors' records and so forth, putting that into a record.
Certainly, in the fullness of time, when that is fully implemented, Infoway will be an extremely valuable source of data but, again, I think we will be looking at some of the similar challenges around access to the data in there. How do we get it for the purposes that we want for a population health purpose? That will be the question. Even though it will exist and will be a rich source, the question will be accessibility.
Mr. Frojmovic: Yes to that. Maybe it is because we are in a senatorial environment that I am feeling philosophical and reflective, but this is something that Ms. Steenberg and I have talked about quite a bit.
The irony of this whole discussion is we are talking about the inability of individuals to get access to data about themselves, whether it is the census or administrative data in a hospital. All of this information has originated with individuals taking the time to share. You answer the phone; you fill out your census form; you go to the hospital; you fill out another form; it is all about individuals.
The thought that Ms. Steenberg has raised is the whole business of democracy, and a 21st century democracy must be about democratizing access to data. Individuals must have the right to be able to access the data they have helped create, not only because they should have the right to access that which they have helped create, but because it is important that they understand and have a full knowledge of what it means to live in this complex society.
At that level, clearly there is a role for a federal government to help bring about more of a sense of democracy in Canada. Being part of a modern democracy is not just about voting. It is about access to data, social data, health data and social determinants of health data.
I will end it on that note. This is about democracy, basic democracy, and basic rights of having access to that which you have created.
The Chair: Thank you so much, all of you, for giving us your time so freely, for helping us out. We probably will be back to you as our report unfolds.
For now, our time is up.
The committee adjourned.