Proceedings of the Subcommittee on Population Health
Issue 3 - Evidence - March 27, 2009 (Morning meeting)
OTTAWA, Friday, March 27, 2009
The Subcommittee on Population Health of the Standing Senate Committee on Social Affairs, Science and Technology met this day at 9 a.m. to examine and report on the impact of the factors and conditions that contribute to the health of Canada's population — known collectively as the social determinants of health (topic: roundtable on the population health database infrastructure).
Senator Wilbert J. Keon (Chair) in the chair.
[English]
The Chair: Honourable senators and guests, thanks to all of you for giving up your precious time in coming here and helping us with our rather monumental task. We are quite optimistic about it. We hope to wrap up and get our final report done within approximately the next month and release it in early June. The deliberations today will be of tremendous importance.
Before I introduce everyone, our objective is to encourage involvement at every level of government and in every sector, going down to the community level. We will have a large emphasis on community. The report will recommend an all-of-government approach for the cabinet committee of the federal government led by the Prime Minister, cabinet committees of the provinces led by the premiers, similar civic committees in the cities, and community committees. This will correspond to the organizations and allow horizontal and vertical integration of all the government, NGO and intersectoral resources necessary to make a population health approach effective.
I will not bore you with any further comments because I want to listen. I will be very brief with the introductions. I will obviously not be doing any of you justice.
We have with us today Odette Madore, our analyst and principal writer for the subcommittee; Dr. Gregory Taylor, Director General, Office of Public Health Practice, Public Health Agency of Canada; Dr. Cordell Neudorf, Chief Medical Health Officer, Saskatoon Health Region; Senator Joan Cook from Newfoundland; Alton Hollett, Assistant Deputy Minister, Economics and Statistics Branch, Newfoundland and Labrador Department of Finance; Vivek Goel, President and Chief Executive Officer, Ontario Agency for Health Protection and Promotion; Senator Nicole Eaton; Ms. Karen Dodds, Assistant Deputy Minister, Health Canada; Senator Catherine Callbeck, former Premier of Prince Edward Island, and a tremendous help to us because of the experience that she brings to the table; Mark Smith, Associate Director, Repository at Manitoba Centre for Health Policy, University of Manitoba; Barbara Reynolds, clerk of the committee, who runs my life. Senator Art Eggleton, former mayor of Toronto and former head of Treasury Board, will join us shortly.
In addition, we have Mike Sheridan, Chief Operating Officer, Canada Health Infoway Inc.; Jean-Marie Berthelot, Vice-President of Programs, Canadian Institute for Health Information; Senator Lucie Pépin, a nurse and senator from Quebec, who is deputy chair of this committee; Jean Harvey, Director, Canadian Population Health Initiative, Canadian Institute for Health Information; Michael Wolfson, Assistant Chief Statistician, Statistics Canada, and my old friend. Senator Andrée Champagne will join us shortly.
We also have Christine Burton, Director, Rural Policy and Strategic Development, Agriculture and Agri-food Canada; and Michel Frojmovic, MCIP, RPP, Director, Acacia Consulting and Research, Federation of Canadian Municipalities.
We have outlined some questions for you to try and maintain some focus, and I have had preliminary discussions with some of you about these questions. The consensus was that for the first round you can address all four, if you wish, or one specific question. I will try to bring you back as we move along to answer the specific questions, because Ms. Madore has a difficult task in trying to integrate all of these comments into a common thread.
Having said that, we will begin with community-based models. I spoke to Michael Sheridan recently on the telephone and had an interesting conversation. I will ask him to comment, and then the floor will be open.
Mike Sheridan, Chief Operating Officer, Canada Health Infoway Inc.: I will keep my comments brief because the subcommittee has put a number of significant and substantive questions to the panel to ponder. It is important that we proceed with that agenda.
I have two commentaries. The first concerns the model that has been employed to advance and accelerate the implementation and uptake of electronic health records. The chair had pointed out that it is important to encourage involvement of all levels of government. I think we have been fairly successful with the model that Infoway has used to some degree.
The potential exists for electronic health records to contribute to the data and information system components and could help form part of a foundation for a population health information system. We must recognize clearly from the start that the data requirements for tracking broader population health outcomes and supporting research and analysis extend well beyond clinical health care information.
With respect to the Infoway model, Canada's first ministers understood the need to exploit the power of information technology. They unanimously agreed to work together to develop a Canada-wide health info-structure to improve quality, access and timeliness of health care for Canadians. The first ministers also recognized that Canada's challenges would best be met with a national commitment to develop solutions that would operate across all health care organizations and systems.
Infoway was created as a not-for-profit corporation funded by the federal government. The corporation's ``owners,'' for lack of a better term, are the 14 deputy ministers of health. Infoway is not a granting agency. It is a strategic investor with our provincial and territorial partners. We play an active proposal in project planning, design and deployment of systems, but we do not actually build, operate or own those systems. That work is done by the provinces and territories.
Joint investment is a condition of the funding. It enables the corporation to lever additional funds from other governments. To ensure value and to mitigate risk, we use a gated funding approach that requires specific deliverables and adoption targets to achieve for each project. Before any funds are disbursed, those targets and adoptions must be met.
We also measure results and benefits. To date, we have approved investments of over $1.5 billion for over 270 active or completed projects. The model has functioned on the basis of cooperation and collaboration. This has been a clear underpinning of some of the successes I hope we have had.
On the second point, I think electronic health records can and should provide unique opportunities to contribute to and advance research, policy, analysis and improve the understanding of health outcomes. Recognizing that these electronic health record systems have been designed first and foremost to improve access, safety, quality and productivity in the actual delivering of clinical care, I think the future holds enormous possibilities for these systems to contribute to life course information and integrated population health information.
The goal we have set is that, by 2010, 50 per cent of Canadians will have their electronic health records available to their authorized professional who provides their health care services. That means the availability of client demographic, provider demographic, diagnostic images, laboratory test results, dispensed pharmaceuticals, as well as clinical reports or immunization data. In establishing this goal line we have placed a high priority on a common systems architecture that has been adopted by the jurisdictions, as well as data and information standards that will permit interoperability of these system solutions.
New funding in the 2009 federal budget will provide the opportunity for expansion of investments in the implementation and use of electronic medical record systems in physicians' offices, investments to enhance and improve standards for interoperability, and make progress on the implementation of consumer health solutions primarily in the area of patient portals.
While the country has made some significant progress on the acceleration and use of electronic health records, there is much more work that remains to be done, including work to actually establish those interfaces so that these data within these clinical systems can be optimized for use in the health care system. I remain optimistic that that certainly can be done, and should be done, and currently Infoway is working closely with the Canadian Institute for Health Information, Health Canada, Statistics Canada, the Public Health Agency of Canada and a number of jurisdictional partners to address both technical and policy issues to optimize the investments in electronic health records, to better respond and to support the data and information needs for overall health system use.
Michael Wolfson, Assistant Chief Statistician, Statistics Canada: Let me start by putting a few remarks on the table with respect to the first question that you have asked us to consider, and that is whether or not we have a clear set of national population health indicators and whether they are appropriate for population health policy and implementation.
The first thing I would say is that indicators are good as nice, simple numbers that you can look at or track over time, but living as I do, in the national statistical office, I have to emphasize that indicators do not just hang like apples on a tree; they require an underlying information system. Therefore, in what I am going to say I will be talking more about the information system that underlies the indicators as much as the indicators themselves.
The simple example is life expectancy. We could not have that number if we did not have a population census, and if we did not have vital event registration, particularly death registration. I think Canada has seen tremendous progress in the development of our health information systems over the last decade; for example, the launch of the Canadian Community Health Survey, the substantial growth in the Canadian Institute of Health Information and the variety of programs and administrative data sets they receive from provincial governments in particular. We are still in the early days yet, and not as far along as we ought to be in being able to assemble these administration data into patient trajectories.
The diagram that has been circulated shows this life course perspective. That is absolutely fundamental to understanding population health and various interventions. One of the simple reasons is that an intervention today may take years before it plays out; things such as physical activity or smoking. It is well known that those are cumulative in their effects or they take a long time to manifest.
One of the other important advances I would note that is particularly pertinent to the question of disparities is that we recently completed a linkage of the 1991 census to death records, a mortality follow-up funded by the Canadian Population Health Initiative. That will give us an unprecedented opportunity, and we have already started to analyze in much more depth the extent and character of disparities in the country.
That is the good news. The other part I wanted to say a word or two about is the future. I believe there are still major gaps in our health information system. One of my hobbies is microscopy so I cannot help making a metaphor. If one thinks about the revolutionary effect that the invention of the microscope had on all sorts of ways that we perceive the world, the whole idea of microbes was not there before the microscope was invented and people could see things. We are seeing it lately in astronomy, as new kinds of telescopes are invented. The fundamental importance I want to highlight is that of the kind of observational tools that we have. The observational tools we have in the area of population health are still nascent. They are not nearly strong enough, I think, to really serve the needs of a comprehensive and thorough-going policy. I will give one example recently of exploiting the data that is emerging in trying to understand things.
Infoway is a potential major contributor with the electronic health record. The idea is having dense observations so that one can exploit natural experiments. What I mean by that is that it expensive to do randomized trials, and by and large they are not feasible, but we have in this country, because of the nature of the confederation, all kinds of different policies implemented in different parts of the country and we should be able to learn from that variety of policies.
One example of note is that there are a couple of researchers funded by the Canadian Institutes for Health Research, or CIHR — Lynn McIntyre and Valerie Tarasuk — who are looking at food insecurity across the country. One of the questions is what is the role of social assistance or EI in those kinds of things? We cannot do an experiment but we have got to the point, at least with the Canadian Community Health Survey and other data, that there is enough density of observation that one can begin to look at whether there are correlations between the prevalence of food insecurity — obviously an important part of population health — and different social programs, levels of generosity or whatever, across time and space in Canada.
I will close there to say that there is a kind of example or hint of where we ought to be going in the information world.
The Chair: Thank you very much, Michael. Mr. Berthelot has been waiting to speak.
Jean-Marie Berthelot, Vice-President of Programs, Canadian Institute for Health Information: I want to build on Michael's introductory speech. It is important to acknowledge that when we work in partnership in Canada, we get great success. Canada Health Infoway is effectively having great success with implementing electronic health records and we should keep this in mind regarding the implementation of a proper information structure for population health.
You have the key partners around the table. You have the Canadian Urban Public Health Network, CIHI, Canada Health Infoway, Statistics Canada, Public Health Agency of Canada, Health Canada, and the municipalities. It is important to work together in partnership more. I know there is a question about changes in legislation, but it is important to have more partnership, and in finding out what is good in that for us as a nation. It is really the way to actively build the infrastructure. There is long experience in Canada of doing that.
The only thing that CIHI does is through partnership. We do not have any legislative mandate such as Statistics Canada does. Therefore we need to build systems that are meaningful and useful to the policy-makers, decision-makers and managers of the health care system and public health officials for population health intervention. I want to add on to Michael's comments that partnership is key here.
The Chair: There is a question in there about the Community Accounts, and our committee had the interesting experience of having a first-hand look at Community Accounts. It would be timely, though I do not want to direct the discussion too much, to ask Alton Hollett to talk about Community Accounts now because my simplistic surgical mind has come to the conclusion that here is a model that could be exploited, or at least similar models developed at the community level.
The reason I circulated this diagram to all of you is that I want your help. This is a work in progress; it changes every time it gets circulated. It does embrace two principles: that is the principle of horizontal integration of all the determinants of health as a platform, and the life course sitting on this platform. Eventually, as Mr. Wolfson just said, we will be in a position where we have longitudinal information. It will be great when that day comes. I do not know how far away it is, but it will be wonderful.
Having said that, I have already talked too much. Mr. Hollett, would you please enlighten us?
Alton Hollett, Assistant Deputy Minister, Economics and Statistics Branch, Newfoundland and Labrador Department of Finance: For such a group, that is an onerous request, Dr. Keon.
What I would say about our work — as I thought about what you are trying to achieve — is that where you go with a national system depends a lot on what you want to provide to people, to what extent you want to engage them, and what kind of questions you want to answer. That is where we began with the community accounts. It stemmed from a couple of things.
Some time ago, I worked with a colleague, Doug May — whom you may know — and we realized that in Newfoundland and Labrador what most people were interested in is information about their own communities. It is what they know best and what they are interested in. If you live in Fogo, you are not interested in what is happening in Port aux Basques, so tell us about Fogo. If you try to talk to our government about what is happening in the province as a whole, they are not interested. They want to hear about Fogo.
We recognized the significant scarcity of data there. There is a lot of data around — on the shelves, with statistics agencies of our own and Statistics Canada and elsewhere — but there was a huge gap in terms of getting it out.
In some sense, there are two orders of gaps right now. One is what is there, still kicking around our statistics agencies, which is not being shared. Also, as we refine our thinking around those things, we realize there are gaps there that must be addressed. They do not exist in techniques and methods to achieve that.
Where we began, moving on from a personal interest, as researchers we were drawn into what our province had as a strategic social plan where they wanted to do some lofty things. One of them was a social audit, and we got drawn into that. That was an interesting experience which is no longer being pursued. However, as part of what we did, we saw that there was a need for community-based data that would be useful to people. Our interpretation of what the strategic social plan needed was base-line data set. We saw a twofold purpose. You could put in place a base line data set that would have appeal to people in communities.
I am no expert on health, but I do have some degree of expertise in terms of sharing data with people in communities because we have had it out there now for a number of years. We know what it takes to do it. We know what it takes to maintain it. We know what it takes to have credibility in it. We know what it takes for that data to have value to people in communities. We also know how easy it is to go half a degree one way or the other and do something that can ruin the whole business so that people will no longer find it appealing.
A key thing that people here need to think about, and your committee, Dr. Keon, is the type of questions we want to answer. I do not mean specifically the data we want to have entered, but do we want to have something on diabetes and something on cancer, that sort of thing. That would be relevant.
We need to consider what sort of information we want to put out there, presuming that we want to be helpful, not only to people in laboratories, clinicians and people in statistics agencies but to people in communities where the real issues and health problems are. In many cases we also need an understanding as to the extent that we are not dealing with scientifically technical issues.
I sometimes tell the story about when you get a bunch of senior officials inside our bureaucracy working on an issue, and the premier says we must think about the integration of social and economic development, then there is a big discussion on what the hell that means. When will they ever stop talking about those silly ideas that nobody really understands?
Go into a community where the fishery has collapsed and families are breaking up, without enough income to fix the hole in the roof of the house, and someone down the street has a drinking problem, and so on. They have a clear understanding of what social and economic issues and integrating that means. What we tried to do there is to develop something that would be useful to people at the community level, but we still need the best standards that the resources we have available to us allow us to put out there. That is a fundamental issue for this group.
I have a couple of more things I would say. Sometimes we followed our instincts on things, and sometimes we found that those instincts are best not to be followed. At other times, we followed our instincts and were pleasantly surprised.
The Community Accounts was an example of one situation where we were pleasantly surprised. When Dr. May first developed the conceptual framework, he took a well-being approach. In many quarters, that would be seen as a touchy-feely kind of a concept and an issue that some people would dismiss as being the soft stuff that professional economists and people who want to do something that they can get their teeth into should not be playing around with, but it seemed sensible to us because people in communities would be interested in education, health and in sustainability as it relates to demographics and who is working, and so on. We thought that was the way to go. We thought of it in terms of a framework whereby these things contribute to well-being, and provide indicators of well- being, and of course data around these various domains, and so on.
The key reason we pursued it at the time was not because of the academic underpinnings of it. It was because it seemed to be what people needed. When we tested it, it seemed to be what people really could identify with and found useful in their community.
We are overjoyed to be working recently with colleagues in Australia and the OECD. We are aware of the commission that President Sarkozy has set up. They have an eminent group — some of the best minds in the world — working and moving in the same direction in terms of getting beyond GDP and trying to talk about well-being from a perspective that takes in more information and aspects of life and society than just GDP. They are not dismissing it; they are trying to refine it and put it all in context.
Basically, that is the approach that we have taken. Initially, we started off talking about almost pieces that you would think of as core determinants of health. From there we brought in the production economy and began to show in our production accounts — which we have not released yet but will — where you look at the various elements of production processes, but then you relate that back to how individuals fit into that process.
The simple-minded gaps that we were sometimes seeing were that GDP was being dismissed as something that did not tell you anything, but not realizing that the man or the woman next door helps in that production process. There are feedback mechanisms such as income that workers receive that contributes to their well-being, so we brought that in. We have recently brought in the natural resources, built capital, knowledge capital, et cetera.
I will probably be judged as arrogant, but in our discussions, Dr. May and I have come to believe that in the Sarkozy work being done by these great minds, they are doing all the right things and going in the same direction as we are, but they have not brought it together in the way that we have. I am not saying that it is perfect, but I will say that it is a darned good piece for someone who knows what they are doing to pull apart.
We would argue that what we have there is very useful for a wide variety of purposes. I would argue that there are not too many people who come up with a concept they want to report on that does not, and cannot, fit into the framework that we developed.
Why do I talk so much about frameworks? We learned this the hard way. You need to allow people the ability to query the data. If you write a macro on this thing, you get out some numbers; if you find the database and you have the time and patience and are not too old, you can scratch and crawl your way through it and find a number that is of some use today. That is okay for people in universities and people in my statistics agency; it is okay for Michael Wolfson if he has time before he leaves Statistics Canada — he spent his life at it — but for people in the community, that does not work.
Therefore, the approach that is implicit in what we did is that we wanted to present data in a manner that, first, reflected people's lives and, second, was intuitive for getting at that data. If someone wants to know about health, they do not need to be a clinician or researcher or have a degree in medical research; all they need to know is that they want something on health. If they hit that button, it begins to tell you things, but we used the academic constructs when we built the data in there. We drew upon proper ways in which professionals think about these various aspects and factors so as to answer the questions before they are asked by what we provide, and I think that makes it quite useful.
I make two summary comments on the Community Accounts. First, it works for us and we are happy with that. It is time-proven. It has been something that communities use and appreciate, and we are finding more and more that that is the case: everything from increasingly deeper entrenchment into bureaucratic processes, entrenchment into our medical schools, entrenchment into practitioners' actions — I am talking from the health perspective — but also developers, et cetera.
I do not know a lot of people around this table, but I know Dr. Neudorf has done very good work, and there are other people here whose work I am familiar with. You have done things your way. It is time to have a second look and see which way things are heading on an international basis. A lot of work is being done these days that will set the scene for the next 35 or 40 years. This committee needs to take a look at that second wind; it is not complicated or difficult to do. Then we decide what kind of questions we want answered: in other words, do we want to engage people in communities, and what are good ways to do that.
I have been invited to speak so many times about the Community Accounts now that, to be honest, I am getting tired of hearing the same questions about all the barriers — what are the right indicators, where would you get the data, how would you link the data. We need a vision as to what will be useful to people so we can create this medium of communication between the people with the issues to be solved and the people, such as Statistics Canada or CIHI, trying to create the data and the people trying to figure out exactly what kind of things need to be looked at in all these various domains.
The Chair: Thank you very much, Mr. Hollett. You have covered the waterfront.
Karen Dodds, Assistant Deputy Minister, Health Canada: The first question asks about national population health indicators and health disparities. I have had the benefit of being at the World Health Assembly in Geneva with all the member countries of the World Health Organization, and it really hits home there that oftentimes we think of health as being critically important to people as individuals, but also, as we sit around this table, we recognize how important it is to a country. You might summarize some of our discussion about the socio-economic determinants of health as ``wealth is health,'' but when you go to the WHA, there are people there, delegates from countries in Africa, who literally wear shirts printed with ``health is wealth.'' It hits home how fortunate we are here.
I started my career as a research scientist in an area where I needed lots of data, and the value of data hit me at that time. You spend more usually in the collection of data than you do in the subsequent use, transposition, et cetera, of data. I have a policy that I repeat with people time after time: collect data once; use it many, many times. I think one of the things the committee can do, and Mr. Hollett has made this clear in his comments as well, is to be very clear that data must be used and must be available.
For health, when you look at your horizontal scheme, there is a wide variety of influences into health. We need data from a huge domain of areas. This committee can speak strongly about the need for data and the need for people to have access to that data, and for it to be used many times.
In Canada, on health disparities, the example that is most often raised to us or that most often comes to us, and at Health Canada the one we address most, is the health disparities between the Canadian population at large and the population of First Nations and Inuit people in Canada, and that is an important gap to address. However, as the Canadian population becomes increasingly diverse, we will need more data as well to identify health inequalities and health gaps that we do not presently know exist or on which do not have that same level of clarity.
There have been studies, and I think StatsCan has been involved in some of them, where if you correct for socio- economic status with First Nations and Inuit health, they have the same kind of health indicators as those outside the First Nations and Inuit community with the same socio-economic status. In other words, there are health inequalities in Canada that do not come to our attention all the time.
It is an area, and I repeat what colleagues have already said, where we are making excellent progress. It was the first I had seen of the Community Accounts in Newfoundland, and I think it is an excellent example. Mr. Smith has already shared with me some of what he is doing in Manitoba with their health research data repository. At the federal and national level, people have talked about the fact that partnerships that we do have, such as CIHI, Infoway, the Public Health Agency, the Canadian Population Health Initiative, have worked on population health indicators and frameworks, but we are still missing much and there is much to do.
I will jump for a moment right to the bottom question — intervention and research. It did not take long on the job for me to say that this is an area that we are missing as an area of work — and I do not think it is just in Canada but around the world. I am not just talking about evaluating the outcomes of interventions. I am talking about actual research, comparing interventions as being something that is needed.
Also, with respect to children, this is often an issue when doing a census: how much data do you want on children? However, medically and scientifically we are learning so much more about things that impact children that have life- long effects that we need more data on children, recognizing how critically important that life stage is to the whole life course of us as individuals and of a population.
The Chair: Thank you, Ms. Dodds. Dr. Neudorf.
Dr. Cordell Neudorf, Chief Medical Health Officer, Saskatoon Health Region: I wanted to build on some of the comments from the Community Accounts question and Mr. Hollett's presentation.
Throughout the country there has certainly been a few places where some natural experiments are taking place with respect to responding to the needs of the various people who need this kind of access to broad-based data for population health analysis, decision-making, program and policy work. It would be interesting to get those few places together to be able to really look at what questions they were trying to answer, as Mr. Hollett has said, how the system has been set up in such a way as to answer those questions, what are the pros and cons and the lessons they have learned, to see if we can build a best-of-breed solution. That does not mean we have to necessarily have a single solution across Canada but, in learning from one another, hopefully these systems can talk to one another and we can build something better out of all of this.
One of the things we found in our approach in Saskatoon is that we were getting requests from three different levels for this type of information. One such request was from the research community, which needs a very different type of access tool. Mr. Smith can speak to what Manitoba has done to focus on that niche.
We have been getting many requests from the community. The type of system that Newfoundland has pulled together with Community Accounts, which has an intuitive feel, is a great example of how to present data in a way that the public can understand.
We are also getting many requests from analysts, decision-makers and policy-makers within government and community agencies, and neither of those approaches seems to work well for them. A certain amount of pre-analyzed data is needed, but they also need to be able to do some queries, more like some of the portals that have been pulled together from CIHI and Statistics Canada.
We have been trying to come up with a tool that has different looks and feels and different levels of security depending on the type of person who accesses it. Some for the public will be open-source, and depending on the user name and password, there would be various levels of security.
We have found that much changes with your reference point. If you are within a small community, you want to see the data of that community. If you are in a larger city, you do not want to see information tracked by census or some amorphous geography that does not make sense to you. You want to see information for your natural neighbourhood, something you can identify with. If you are a decision-maker at an electoral level, you might want to see information by electoral ward.
We need to build a system that has flexible geography and allows you to roll up population health data at different levels and present it in a way that is meaningful to the person who needs to make a decision. That will take the data from being abstract to being useful for program and policy decisions as well as for the public to use in terms of advocacy.
We can learn from each of the approaches that have been taken at the federal, provincial and local levels to build a best-of-breed solution that has the various types of functionality needed to make those decisions and is scalable and affordable. It must have the appropriate levels of security, functionality for analysis and display, and the type of architecture needed to support these very disparate sources of data, from health through to social services and education, et cetera.
I think the time is right for this, because there are good examples at various levels. We have had enough experience with implementation that I think we can learn from it and build something better.
The Chair: Thank you.
Mr. Berthelot: I want to follow up on the comment that health is wealth, and talk about the challenges in developing a framework with getting information at different levels. Problems were raised about linkages, providing proper estimates and ensuring that we get the data in.
We need to acknowledge that health is wealth, but health information is public good. We often talk about ensuring that we protect the privacy of citizens, which is critical; we must. However, we must find a good balance between protecting the information of individuals and allowing the use of information on a population group to inform our policies and strategies.
We must acknowledge that health information — and I say ``information'' because it is beyond health, it is social services and unemployment information — is a public good. I know that some privacy commissioners across the country try to strike a balance between privacy and public good, but I do not think we are going far enough. We must use all the information we collect on citizens in order to learn about the society: where we are, where we are going, how we are doing, how we compare across the country and how we compare with other countries. That is critical in terms of effectively facilitating the collection of that information.
I fully support Mr. Hollett's assertion that we need to start with a framework. We should not conduct a fishing expedition or do data mining. We should not simply get data and try to find something in it. We should start with a conceptual framework. The one that was described here about the lifetime trajectory is a start. Having a framework is key to identifying how the different sources of information are linked, how they can inform the discussion and how they can be used at different levels.
I would like to move on to the different levels of information. We need to acknowledge that local-level data is the not the same as regional-level data with regard to health. Health authorities have specific needs that may go beyond what is needed by a community or at the provincial level. In order to do that, the conceptual framework should not be only at one level; it should try to acknowledge the relationship between those different levels. In large cities, you need to know what is happening in different neighbourhoods. It is very important to acknowledge that.
When we have that conceptual framework acknowledging the different levels at which information can be used, it will be informative regarding what type of information we need and how we collect it. For example, doing a longitudinal survey at the community level is probably not meaningful. Longitudinal surveys are normally used to understand phenomena that are a bit more general. If you want to understand the factors of proper development in children, those factors probably have some common determinants across the country. A longitudinal study, which Statistics Canada has, to try to understand those factors, is key. However, I do not think you would be able to support it financially, in the collection of information or even by sample size at the community level.
Having a good framework allows you to identify the type of information you need at each level. Cross-sectional surveys and administration data are great. Administrative data includes everyone who has access to a service. They are great to effectively provide information at the community level. You can go to a very small geography. However, again, you must link that to your framework.
Building on what Dr. Neudorf and Mr. Hollett have said, the data must be strategically produced in ready-to-use form. It is great to have research data bases, but when a policy maker or decision maker has a question, they need the answer, not in three months or three years when the paper is published but in three hours or days.
We must be strategic. That is why the framework is very important with regard to the questions you are trying to address. Once you have those questions, you can build a framework, collect data and build tools in partnership with the different stakeholders. Those tools will evolve over time; you will not get it right the first time, but you are trying to provide ready-to-use information.
Some work has been done. With the StatsCan-CIHI health indicators framework we jointly produced a lot of information at the health regions conference. We need to build on that.
We need more consensus about what information we need to collect and what information we need to inform decisions at the city level, the health region level, the provincial level and the pan-Canadian level. It is key to develop the proper information system.
Different actors around this table could play roles in different areas — CIHI, StatsCan and the Public Health Agency. Health Infoway will play key roles when EMR is implemented in physicians' offices to understand what is happening in primary health care. They can work together to identify, based on a specific framework, some standards in terms of the content of the information that we need to collect.
There is also a need to synthesize information about evidence. For example, CPHI has produced many synthesis documents in the past. What do we know about body mass index in the country? Does body mass index vary by province? What is the impact on children? Do we know if there is any intervention? Intervention and research is one thing, but summarizing the knowledge of intervention is another. Do we know which interventions work? As part of the framework, a knowledge synthesis component also needs to be developed.
I spoke about the level at which data need to be collected. We must ensure that the framework should not just be an information structure; it should be collecting information for action, so that the information that is being produced is actionable at the appropriate level.
The Chair: Thank you. I will ask Mr. Smith to speak next, because I want to get his response to Dr. Neudorf.
Mark Smith, Associate Director, Repository at Manitoba Centre for Health Policy, University of Manitoba: Thank you very much. It is a pleasure to be here.
I want to highlight the fact that in Canada we are very good at collecting lots of detailed information about what services we provide to our citizens and what contacts they have with the health care system, the social assistance system, education and so on. However, we have not done a very good job at collecting that information and exploiting it to produce the information for the people evaluating and making decisions on policy and programs.
In the area in which I work, which is building the data repositories, one of the lessons we have learned is that building the relationships with government in order to build that capacity takes a long time.
Through a conversation I had with Dr. Taylor this morning, I was reminded that a decade ago, all the provincial governments had the capacity to measure chronic diseases and report on them at the provincial level. However, it took leadership from Health Canada to say that we need to build that capacity, not only within the provinces but across the country, for example with the development of the National Diabetes Surveillance System, which was just one chronic disease. That work has been ongoing for a decade, just to develop that system.
We are at the point now where we can exploit the capacity to measure all chronic diseases. We are in the process, in collaboration with the Public Health Agency of Canada, of doing that. This has meant developing a lot of infrastructure and relationships between many groups, and primarily between the academic community and government. The capacity to do this within governments is not there. Governments need to look outside and develop those trust relationships with academic groups. That is just in the health domain. However, we are talking about the disparities of health and we need to look across many governmental departments, such as social services, education and justice. We need to build the infrastructure in order to collect data from multiple governments, and we need to start to link the infrastructure together in various ways.
This is an ongoing process in Canada right now. The process is happening at ICES, the Institute for Clinical and Evaluative Sciences, in Toronto; at the Manitoba Centre for Health Policy; and at the newly rebranded Population Data BC initiative. This is a behind-the-scenes, below-the-radar development of which we are starting to be able to take advantage through measures like Community Accounts, where the information can be analyzed and reported. As Mr. Hollett pointed out, we have the right methodologies developed to do this, and it is the development of the methodologies that is important.
While we are focused on how to build this health information infrastructure in Canada to look at social determinants, we should pay attention to how well we support those initiatives at the provincial level to bring the data together for academics and researchers so that they can develop the methodologies for people in government, policy- making and decision support to exploit.
I would like to briefly comment on the electronic medical record. I do not disagree with any of Mr. Sheridan's comments, but I wanted to throw out a cautionary word. We have been working with the routinely collected information in this country — I will call it contact information — for probably two decades now, and we are just beginning to really understand what the information means and how to interpret it. The electronic health record is a brand new baby, so to speak; it is not even born, basically. We do not know how long it will take us to be able to understand what the data is telling us, and to develop the appropriate methodologies to inform policy-makers and decision-makers. I think that journey in itself will take us another two decades. We should start with the resources we have today and we should evolve to incorporate these new information resources as they come on stream. We need to have that basic capacity in this country, within provinces and nationally.
What could result from a group such as this is to provide some leadership around the development and also the coordination of these issues. Right now, the issues are siloed. Most of the provinces that have this capacity operate within the province itself and not cross-jurisdictionally across provinces, yet there is much we could learn from collaborating with one another and with national organizations such as Statistics Canada and CIHI, and through the dissemination mechanisms that Dr. Neudorf and Mr. Hollett spoke about. That collaboration is important, but the underlying base of collecting the data and encouraging government departments to work together is also important.
The Chair: Thank you very much. Senator Eggleton wishes to open up another dimension of this discussion.
Senator Eggleton: Thank you all for being here. It is a great discussion; I am enjoying it.
I do not know whether my comments come under this section or more under the linkage section, or maybe a bit of both. We have heard from you as to your experiences and as to where you perceive the gaps and needs are. We have heard Mr. Sheridan talk about partnerships and Dr. Neudorf talk about ``best of the breed.''
What I want to explore is how we get there. What is the organizational architecture? Being a government person helping to develop public policy, I am trying to figure out how we get from here to there. We have a lot of players here, not only players in the room at different levels of government. We are talking about the determinants of health that cross over many different departments and silos within government, at the federal, provincial, territorial and local level, and then the non-governmental contributors. There are a lot of actors here. Who should the lead actor be? How do we get this organized? What is the architecture for the organization?
Mr. Hollett: I would like to make a comment that will not answer your question directly, but, in my mind, it is an important point that we need to consider. In order to be successful at this, provinces will need to play a larger role than they have hitherto. As it currently stands, Statistics Canada has been the repository. It has taken it upon itself to try to pull together data for all the provinces. That has come with a great benefit, but there is also a non-benefit. If you are trying to get people at the community and neighbourhood level to work with their data, because those communities and neighbourhoods are part of a province, there is a vested interest there for a province to be involved.
We have a system here in Canada, called the national statistical system, which is led by the chief statistician of Canada. Each province and territory has a statistical focal point. Most provinces and territories have statistics acts that mirror Statistics Canada, which gives them the authority to do the work of statistics, data development, data linkages and so on, on a professional basis. The problem is that the system is weak. I do not want to offend anyone but, at the same time, I want to say what I think. I think the leadership has not been strong. Statistics Canada's leadership has been inadequately strong. When our provincial and territorial governments established units to do this work, there was vision and there were resources and the programs got off to a good start. Over time, however, as we became better and better in the provinces, we were taken for granted.
By way of example, my statistics agency provides input into 90 per cent of what goes to cabinet. The only time the Newfoundland and Labrador statistics agency is ever mentioned in cabinet is if it is there to do something directly or if someone is going into cabinet and they are afraid they will get in trouble, and then they want to say they got the data from us. This is not a trivial point. If this is to work, we need to have the strength in the system so that the statistics agencies can make the contribution where it is needed and to get the buy-in from the provinces, and also the investment that will come with that. It is not a trivial, financial issue to try to do some of these things. The burden of that will have to be shared.
I have been in Australia twice now. They have had me there because they were interested in the Community Accounts because they do not have a system like we have in Canada. They have the Australian Bureau of Statistics, and then they have some branch offices peppered over the continent. However, before the last chief statistician left, he established a formal mandate in the Australian Bureau of Statistics that they should engage with communities and work with them to develop and share data that is useful to communities.
The first time they asked us to come down, we showed them two things: First, how data could be shared in terms of community accounts; and second, if you did share data, nothing bad would happen. Although they do not have statistics agencies in each state, the health department, the labour department and other departments in each state all want to hang on to their own data and not share it. They got us down to break that ice, and apparently it worked. They made a good deal of progress. I went down again for a variety of reasons, one of them being that they wanted to talk more about our experiences with engaging communities around data.
My point is that if you want to do this sort of a thing and have it work, the provinces must have a vested interest. They must realize that there is a different job to be done, some parts of provincial and territorial governments have to be strengthened and there must be a better partnership between those and Statistics Canada. The partnership now is all right, but it is not strong enough.
I was director of Newfoundland and Labrador Statistics Agency for ten years, and I believe what I am saying is right. We are not well served by the weakness in the system. The pieces are there but they need to be strengthened, and for this initiative to work, the provincial and territorial governments must buy into it with the federal government. Otherwise, you will have elements of chaos, and you could get into a situation where the federal government comes out with a new approach for population health and the provinces do not buy into it, while the communities that have the problems are in the provinces.
Senator Callbeck: Mr. Sheridan, you talked about the electronic health records, the progress that we are making, and the fact that the first ministers, as you say, unanimously agreed to work together to develop this system.
Mark Smith has mentioned the word ``silos'' in that we have a lot of silos. Where do we stand with this system? Later on in your remarks, you said there was a high priority on a common system, but where are we with that?
Mr. Sheridan: That is a good question. The platform for making these things work is ostensibly a systems architecture that took us two years to develop. In the development of that architecture, we said that there must be a specific set of standards and a specific way to hold data in the information systems. There must be a specific set of standards for how that data is stored and transmitted. It took us a long time to come to a consensus on the way that system architecture should look, and on the capacity and the time for people to implement it in their jurisdiction. We do have a consensus on the architecture and the standards, and those systems and architecture are being used to implement the electronic record systems now being put in place in the provinces.
I am concerned about Mr. Smith's comment that it will take us two decades, once we have that data and they are being used in a clinical sense, to optimize the utility of the information for policy, for research, for analysis, et cetera. I am hoping we can do better than that. I am hoping this initiative will give us the opportunity, and I am not saying it will be two or three years, but when you live the kind of lifestyle I have, I will not be around to see that, so I am working hard to make sure that these initiatives are optimized in the shorter term.
With respect to where we are, we have a consensus on what the data and standards should look like, and in fact these systems are now being implemented. They are not all identical. There has been some recognition that there are differences across the health care system but that fundamental piece, the architecture, is now in place.
Senator Callbeck: Why can they not be identical? I do not understand that.
Mr. Sheridan: There are some fundamental divisions in each of the jurisdictions' capacity to move forward, given what they have in place now. We recognize that. There have been a number of different approaches.
The United Kingdom used a complete rip and replace approach. They funded over $60 billion worth of replacements of systems within the U.K. so that everything was ostensibly one-size-fits-all. We recognize that that probably would not work, and we have taken the approach that, where we can, we will retrofit systems, ensure those systems eventually meet the standards and work within the architecture.
Senator Callbeck: They will meet the standards but will not be identical. Are you saying that we will never have identical systems?
Mr. Sheridan: When you say ``identical,'' no, we will never have completely identical systems in each jurisdiction. We will have a common set of architectures where diagnostic imaging repositories, drug systems and lab systems will be able to hold and share information. In each of those jurisdictions the repositories for those important pieces of information will in fact exist. They will be interoperable and reflect a common view and approach to it but will not be necessarily identical in each jurisdiction.
The Chair: We only have seven minutes left in this session, so we will get as many speakers in as we can and get on to privacy a bit later. Ms. Burton, you are next.
Christine Burton, Director, Rural Policy and Strategic Development, Agriculture and Agri-food Canada: Speaking from the Rural Secretariat, we do not deal with health data in the depth or breadth that the rest of the people around this table do, but I am hoping that our experience may be of some utility to you. In particular, I will connect with some of the comments made by Mr. Hollett and Mr. Neudorf.
Although the Rural Secretariat is located within the Department of Agriculture and Agri-food Canada, I often say that is the function of an accident of birth. We had to be placed somewhere but we are what is called a ``horizontal file'' and, as such, we interact with departments across the federal system and also work with our colleagues at a provincial level.
I will be speaking briefly about our community information database. For us, the pivot point or nexus is the economic and social well-being of communities and the individuals, as referenced by Mr. Hollett. A healthy community means that there are economic opportunities, economic services, recreational opportunities, health care, education services, and so on. As such, it breaks down the silos in terms of understanding community well-being.
I have often said that data is not information, information is not knowledge, and knowledge is not wisdom. However, data is the first step on the route to wisdom, and wisdom is what we are called to as decision-makers within government and within communities themselves.
This table is intensely aware that data can be overwhelming, not only because of its sheer volume, complexity, range and interconnectivity but also because of the question of how to make it accessible to the users. By ``accessible,'' we mean not only in the tangible sense but also in terms of making it understandable, engaging and manageable in a way that meets the users' needs, considering that users will include the policy-makers not only at senior government levels but also at local government levels and in the family of NGOs.
The Community Information Database that exists within the Rural Secretariat is a free web-based mapping tool that provides consistent and reliable social, economic and demographic data for all rural communities and regions across Canada, namely, all 2,200-plus rural communities across Canada. It was developed by the Rural Secretariat in collaboration with provincial, territorial and community partners as part of the Government of Canada's ongoing support to rural communities because there was an understanding that they needed to have a tool that could enable them to understand their own communities in relation to other communities and, as such, to make informed decisions. We have over 700 community and regional indicators on our database. However, they are taken from census data and, as such, they are available for 1996, 2001 and 2006. I was jealous when I heard some of the things about the Community Accounts, which has data available over several years that are non-census data.
The Community Information Database has a wide range of indicators, including some that relate to non-medical determinants of health such as education, employment, family structure, income and housing; and data regarding some of the communities in terms of Aboriginal peoples, the makeup of the immigrant population by region of origin, the type of community you are dealing with, breakdowns by gender and age, and so on. It is a tool that reduces the amount of time and resources required to obtain and analyze community, regional and provincial-territorial data. A key thing that it has — and this was something that the Community Accounts did not have — is the ability to generate interactive maps. Much of the Community Accounts have tables, graphs, and so on. Mapping tools can be very effective in engaging people who may not be as experienced in working with data.
Rural communities and citizens have always had a need for quality data to provide a basis for informed and realistic decision-making. Although there are several sources of local data in Canada, community level data remained quite dense and complicated. It was a challenge for them to gather and access that data in a manner that they were able to use. By presenting it in this dynamic way, through interactive maps, tables and charts, it allows for an increased awareness and understanding of statistical information, which can be quite difficult to manage if you are not someone who lives in that world on a daily basis.
The Community Information Database has been used extensively across the country for program development, community planning, decision-making and proposal writing. Communities are able to develop more precise proposals that more effectively respond to the actual need rather than the perceived problem but can help them to identify the real problem. It has also been used for educational purposes, the comparison of community performance and the creating of profiles for the use in economic and social development.
In terms of responding to the question, ``Is the Community Accounts a model for other governments to benefit from,'' we would say yes. It presents the information and organizes it around well-being. It has a large amount of data, information and examples in terms of what it provides. Data is available over multiple geographies; ours is available over only limited geographies. You can look at information on either a school district or a health district basis, which is useful for communities, and so on. It has a comprehensive list of data available from other sites. It has a broader range of data than that available in our database in terms of the number of teachers, volunteer engagement, air quality, level of infrastructure, and so on. We do not have that in our source, but we do think that the mapping capacity is a very important piece that needs to be looked at in any model that might be taken on by the federal government.
An example of a health mapping tool that might be of some interest to this committee is the Canada Council on Learning's health literacy interactive web-based map. I would refer this committee to that particular site which may be of some specific interest to you from the health perspective.
On the question of whether there should be consolidation or rationalization of interdisciplinary cooperation, we would support that. Dr. Neudorf spoke of the issue of province-to-province experience. I can speak from the federal experience. There is an interdepartmental committee looking at how we can better collaborate and link between our various databases. However, it becomes a question of volume. The databases become quite unwieldy in terms of the amount of data that might be managed. There are also privacy and security issues. You can end up with the issue of the ``mother of all databases.'' Our colleagues in HRSDC confronted that issue and had to disaggregate because of the privacy and security issues, as well as its ability to manage the information. It can be become quite unwieldy, particularly when you are dealing with different functional interests.
In conclusion, we have found that there is a potential for databases that do bring together information in a way that is meaningful and usable at the community level, not merely at the statistician or policy wonk level. We love that kind of data, but we are trying to make our data available to communities and individuals so that they, too, can use the data in a more effective way.
Michel Frojmovic, Director, Acacia Consulting and Research: Thank you for having me here. To be clear, I am here because of the work I have been doing with the Federation of Canadian Municipalities, which supports something called the quality of life reporting system which will not be presented here as a possible national framework. There is also the work that I have been involved with, relating to something called the Community Social Data Strategy. It is an initiative to bring these kinds of data into the hands of municipalities and community groups at the local level, particularly in larger cities. Those are a few of the initiatives.
The comments I have are about that municipal perspective. I am happy to see that I am probably repeating or reinforcing a lot of the perspectives that have been raised already. Two key words that seem to be coming up are ``geography'' and ``infrastructure.'' By ``geography,'' there is a value in understanding whether we are looking at social determinants of health or health inequities and understanding the locale. Looking at inequity at a national-provincial level necessarily masks a lot of the inequities we are trying to understand. The ability to understand municipal government boundaries and what we talked about earlier today, namely neighbourhoods and submunicipal boundaries, those small areas, is important not only to understand those inequities because of a lot of what municipal governments are involved with, but also to address many of those determinants of health that are of a nonmedicinal nature. That municipal perspective is important.
When I say ``geography'', one big issue is small area data. One of the limitations and the frustrations, as a municipal government working on municipal initiatives, is that when the indicators are being developed, we do not want to have an exercise where we drive indicators available in the data. We do not want a fishing expedition. When you try to play the indicators out on a local level, they seem to be inherently immeasurable for a range of reasons. How you have that sensitivity to be able to understand these dynamics at a local level is important. The census does an excellent job of capturing those small area dynamics. The challenge is how to take health data, particularly administrative data, and make it compatible with those small area geographies available through the census.
Regarding the Infoway initiative, one question had a practical level, namely, will there be a column in all the data collected that provides a postal address or a postal code — that is, something that allows us to take what will be reams of data and allow us to link it back to the small areas that we are talking about. At the end of the day, that is how we do it. We find something that allows us to connect a person's admission into a hospital and all the information that follows back to their residence, typically, or a place of work. That is what makes it work. When that does not get collected consistently, then all that information is typically lost. Those who work at that level know that, when you are designing those administrative data sets, the little pieces of information become vital. It is called ``administrative data'' because it is collected for administrative purposes, not policy purposes. The sensitivity to the policy and the research application must be done at the outset. The advantage of the Infoway initiative is that we are at the outset. The challenge is retrofitting the wide range of existing administrative data systems to make that work. We collect the information in a particular small area focussing on the geography. We just heard about mapping. The use of information systems allows us to integrate social and health data. Geographic information systems were designed for that purpose.
This country has become quite good over the last two or three decades in that area. There is a program called GeoConnections through Natural Resources Canada that supports that sort of integration. That work is being done.
There are also issues as to how to access data. I mentioned the community social data strategy that brings together local organizations within municipalities, school boards and health regions. How they access the data is very important. There are tools available. The least sophisticated is picking up the phone and talking with someone at Statistics Canada. That could potentially take a few months to obtain a particular data set. However, there are ways to do remote programming. Statistics Canada also has a research data centre model with a capacity for remote access. How we start building capacity to allow programmers with skill sets to do that across the country would be part of the challenge as well.
Again, this is all about that municipal small area perspective that we have heard a lot about this morning. It is quite exciting.
On the infrastructure side of this issue, I have been trying to think of an analogy between roads and highways and what we are talking about here. This is about building a national small area data infrastructure. For those of us who work in this area, we do not see this as being fuzzy-wuzzy infrastructure; this is hard core infrastructure. There are many shovel-ready social data and health data infrastructure projects ready to go. They have all sorts of jobs attached to them that are relatively gender balanced, which is an issue that has arisen regarding infrastructure stimulus.
I was trying to determine whether the analogy with the roads and highways was fair. I would love to hear someone say this is stretching it. However, sometimes I have the sense that we are worrying too much about which cars will be going on the highway. Will they be SUVs or something else?
The first step in building infrastructure is acquiring the rights-of-way. You can sort out all other details later. There may be legitimate debate about whether we want to build a rail system or one that accommodates cars and trucks, but we may already know that. We do not seem to have invested in that basic infrastructure of acquiring the rights-of-way that connect many of the initiatives already ongoing.
There is a great deal of interesting integration of small area social and health data at a local level within provinces. The challenge is how to integrate these, but you integrate it with that infrastructure. How do we manage that complexity and diversity? The danger of the national framework is that you oversimplify and do not allow for the complexity playing out locally. Perhaps the framework has to be more about defining a set of strategic goals and intended outcomes. Even a rigid set of indicators may not play out in the end. You will spend all your time designing those cars and not the hard core infrastructure.
Those are some comments from the perspective of municipal governments. Geography is all about understanding how everything we are talking about here plays out at a local level within municipalities or at the neighbourhood level. That level of attention seems to be vital to an understanding of population health and having an effective set of interventions. Then, the infrastructure side of this literally would be how to treat this 21st century and 22nd century infrastructure investment where we need to go beyond simply worrying about asphalt.
Vivek Goel, President and Chief Executive Officer, Ontario Agency for Health Protection and Promotion: I worked as a public health researcher for about a decade as many of these initiatives were being discussed. I then went off to sleep for ten years as a university administrator. I have now come back to build a public health agency for Ontario.
I bring a perspective wherein I missed out on how much progress has been made. There is some sense of hand- wringing, but most of the organizations represented around this table were not there ten years ago. We had Health Canada and Statistics Canada. Now we have CIHI, the Canadian Population Health Initiative and the Public Health Agency of Canada. There has been a lot of progress at the national level.
I do not think we have a shortage of indicators — Mr. Wolfson can hold up his book again. I think someone mentioned 600 indicators in their data set. Ontario's public health epidemiologists have a list of 300 indicators on which health units report. We certainly need consensus. I understand there was another consensus conference held on pan-Canadian indicators. My sense is that that will continue to work.
We do not have a shortage of data. What we have is a shortage of information and knowledge from the data, and the ability to bring it together. What is missing is a clear idea of what we want to do with that data, or a clear set of the questions we want to pose, as it was put previously. I do not think the questions can be posed until the goals are clear. Your earlier paper certainly talked about this aspect.
The health goals for Canada now are a wonderful set of aspirational statements. However, they do not get to the operational level to address what we will be doing on which population by which time period. Health Infoway has set a goal here of 50 per cent of Canadians by 2010. I will be looking forward to seeing whether that is met, but it is a measurable statement. We are missing that for population health now. Until you have those goals, you cannot start to address what a clear set of indicators should be.
I have a few other points. Having said that there is lots of data, it is also clear there are many gaps. I would caution that before we go off into new areas, we have gaps in fundamental data. Mr. Wolfson, what is the most recent year we have complete mortality statistics for?
Mr. Wolfson: 2005.
Mr. Goel: We are now in 2009. This is not because the data are not available. These issues go into your next topic on the agenda. Fundamental issues persist around the sharing of basic data that can be used to derive validated measures that can look at a variety of information such as mortality or birth weights. This data provides detail at a very limited geographic area to look at inequities and disparities and to monitor programs and changes.
However, we cannot produce those in a timely manner. We have wonderful new opportunities to pursue but we also need to look at obtaining some of these fundamental data in a timely manner that also allows for international comparisons between jurisdictions.
The electronic health record certainly will be a major system. I hope it will not take 20 years to figure it out. I know this is in the Health Infoway charter that the primary focus is on delivering clinical information systems, which Mr. Sheridan outlined. It is important that we not forget about the secondary uses. I know it will include the six character postal code. When it will be available is an important issue, but we know that detail will be included.
As we look at these systems, it is important that we think about these other uses. I would caution us not to use phrases like ``secondary uses of data,'' because these are primary uses of that data for purposes of population health monitoring and surveillance, et cetera. We fall into a trap when we lump the clinical uses, population uses and research uses as primary uses. In that sense, everything else becomes secondary. There are many different kinds of secondary uses, and some are as important as the primary use.
As an example, I learned a few weeks ago that ethnicity has been dropped as a variable. I am not sure of the current status of this item on the panorama public health system and I do not know the basis for the decision. From a population health perspective, ethnicity is a very important variable. I suspect it was a case where someone decided that, from a primary user's perspective, it would be hard to capture this data, and somewhere in one of those federal- provincial tables it was dropped. This lens has to be applied at all the decision-making tables on all these system developments.
The issue of local data has come up quite a bit, and I think it is important to ensure we have the information at the smallest geography possible. I think someone said in a sense, subdivisions will not map a neighbourhood. A six- character postal code is the best local code we have. The ability to take that and re-profile it in different ways across all our systems is important.
It is also important for us to learn from other disciplines — community accounts certainly takes a broad perspective — and from the private sector. If you go to any of the firms such as Environics, they can tell you about a block face and they have profiles of the people who live there and, for marketing purposes, what is going on inside each of those houses. The methods they use do not rely on collecting all those detailed characteristics about every house. They take the data from the census, along with data from multiple other streams, and then impute values using modeling techniques to come up with profiles for those neighbourhoods. We can learn a lot in the sort of work we want to do to create the kinds of reports that are important at the community level.
For me, the most exciting part of having come to this meeting was the opportunity to look at Community Accounts. I played around on the website. It is a wonderful tool and delivers a lot of community level information. However, for a lot of those variables, when you really drill down into what I want to know for my local community, the answer comes back that the data is not available for your local community and it provides the next level up in geography, or many levels up. Some of these other methods could be used to then create for that community the approximation and the imputation of what is going on.
Just to close with the question from Senator Eggleton about the organizational architecture, I would make a plea to not create more organizations. It is wonderful that we have the ones that are sitting here, but we do not need more organizations in this area. I think, as Mr. Berthelot said, the partnerships and the models need to be very clear. The importance of working together with the provinces and territories as well as the federal government on this, I think you do have a model of something that has worked well across this area and it is the Canadian Population Health Initiative. The projects have been mentioned several times throughout the morning. It is a small organization but is the kind of organization we need in these areas that can work to build the bridges across many other groups working at the national level, as well as across the provinces and territories.
Senator Eggleton: In response, Mr. Chair, I really did not mean to suggest setting up a new organization. I meant how we could evolve a partnership, and who would take lead roles.
The Chair: We do have to address linkage and privacy issues, and we have until eleven o'clock to do so. The next speakers are Mr. Wolfson, Mr. Berthelot, Ms. Dodds and Mr. Smith. Perhaps you four people could deal with both issues. In other words, say what you wanted to say and deal with the linkage and privacy issues.
The only thing I would say about this is that I am not a high-tech guru, but I have wasted more hours of my life than I care to admit sitting on committees dealing with the development of electronic medical records and the initial development of Infoway, and all of this that took five years of sittings. The one thing that would always get me down was the amount of time we spent on privacy. Again, as a simplistic surgeon, I always thought that the patient owns the information; let him build whatever firewalls he wants and put whatever information he is willing to give into the data bank and let us get on with life. However, I suppose that is too simplistic.
Mr. Wolfson: I want to pick up briefly on some of the earlier comments. First is on the small area geography. We observe instantly at Statistics Canada that the finer the geography, if we go from national to provincial, provincial to municipal, municipal to health region, the amount of interest in the data increases dramatically at the finer geography. There is no question that that is important.
Mr. Goel pointed to this: There is a question about the availability of the underlying data. I would caution us not to take the population census, for example, for granted. There are two parts to the population census: There is 2(a), which is fundamental and is required to enumerate the population electoral districts and things like that, and then there is the 2(b), which is the one-in-five subsample where you get the long form. Every five years, there is always a debate inside the government about what will be on it, how will it be funded. If anything, the kinds of information we are talking about from a health and determinants point of view would require that the 2(b) be expanded in order to provide a frame for some of the kinds of evaluation.
As I am sure Mr. Hollett could tell us, it is one thing to get the counts of the population by industry and occupation, but it is quite another to get smoking rates and physical activity data down at the neighbourhood level. We just do not have it. To some extent, as Mr. Goel has said, modeling can help but sometimes you would rather not rely on the guesstimating involved in modeling.
There was a comment, and I cannot remember who made it, that neighbourhood area stuff and longitudinal stuff do not go together. If the committee has not heard from Clyde Hertzman in British Columbia, that is a nice example of working at the community level in this case with readiness-to-learn indicators, and following up the kids to see what is happening. It sounds as though it is a process that energizes those communities that have their act together.
I would like to say a bit on privacy as a segue into a comment about Senator Eggleton's question. I want to reinforce what Mr. Berthelot said about the public good aspect of the data we are talking about. I did get agreement, one time when I was on a podium recently, saying that there is a privacy chill in the country, but notwithstanding the debate we had, I do think there is. I would add to that; I think there is a fear-of-embarrassment chill.
Sitting where I do at Statistics Canada, we have been working for three or four years with the power of the Statistics Act, the chief statistician writing to all the deputy ministers of health across the country saying ``We have half a million people who have given us their permission to link their survey results to their provincial health care records. Would you please give us the provincial health care records?'' We have two provinces that have signed an MOU so far, and a couple more are on the edge. However, this is taking years, and it is in the Constitution that statistics are a federal responsibility. It is in the federal Statistics Act that we have the authority to collect this data. We regularly keep track of all the provincial acts, and every single provincial act says that you are allowed to divulge this data if otherwise required in law, which is the opening for Statistics Canada, yet things seem to take forever. I can understand that if you are a public servant and you are risk-averse, it is easier to say no than to take the chance of sending the data out.
That is a bit of a segue I will use to Senator Eggleton's question on who should take the lead in all of this. I am not sure I have a great answer, but it is useful to go back in time. In the early 1990s, Martin Wilk, as former chief statistician, was asked by the former deputy minister of health at what was then the National Information Council to look at Canada's health information system. Martin Wilk does not pull any punches and his summary description was that our health information system was in a deplorable state. As former chief statistician, it would have been easy for him to say ``We will give Statistics Canada a lot more clout.'' However, he did not and the report did not recommend that, and we had a lot of debate about this issue. Instead, he recommended the creation of CIHI, in effect, although CIHI has not evolved in the way that was originally envisaged. The insight in that report was to say that there are too many players in the health information landscape for Statistics Canada, as a federal department, to play the lead role. There needs to be some sort of a coalition, a partnership that brings a sprinkling of deputy ministers, people from the health and medical professions and the research community together around a table. In the report, it was called the health information coordinating council. There was a separate recommendation for an organization that would bring together, for example, financial data and patient data, which were in two separate organizations previous to that. We should put the dollars and people together if we are ever to do a cost-effectiveness evaluation
The CIHI board has been tremendously effective and works well. Its focus, quite naturally, has become predominantly the management of the CIHI organization, which is fine, although there is a recent example in the partnership with Infoway — pursuant to CDM direction — to look more broadly at what we will not call secondary use but population uses, for example, of the emerging health record.
I look at the first ministers' accords that started in 2001-02 and there was a bit of a push — Lord knows, I was not in the room so I do not know in detail — for better health information. The trouble was that it was tied to accountability, which immediately got the hackles up of the provinces. While there was a large fiscal transfer from the federal government to the provinces, there was this other thing that, from an information point of view, was perhaps unfortunate.
My sense now — and I agree completely with Mr. Goel's comment and that of others around the table — it is not time to create another organization. What would be best is if we can figure out some way to create a partnership amongst the key organizations. Then the question will be how you enforce anything there. It seems to me that the Conference of Deputy Ministers would need to play a key role there. Maybe somewhere there needs to be a secretariat to the partnership that would keep things together and act as the key focal point with the CDM.
I read through the testimony that the committee heard a month or so ago with Mel Cappe and Jim Mitchell where there was much talk about a big-program perspective, and reference was made to child benefits and the need for the Prime Minister and first ministers across the country to take a lead in these sorts of things. That may be entirely appropriate from the point of view of launching programs, but information is something that needs to have an ongoing apolitical or depoliticized structure to it. It should be outside of the fray, notwithstanding the good words that the former clerk had to say about the importance of the Prime Minister and leadership, maybe only to get it started. I think they used the phrase ``below the radar'' in their remarks, that this needs to be something that gets to be taken for granted.
The Chair: Mr. Wolfson, I want to respond to you before the other speakers. One of the things we looked at along the way is that there was a suggestion that we have a federal department of human development and corresponding provincial departments. I can tell you that that would not fly at all. You need the top level cabinet committees to drive this initiative. You are quite right; the information gurus do not have to interface at that level at all. They can do their own thing.
Productivity is why we went with this model. Our report has not been finally drafted yet, and we must write it in such a way that someday it can be wired. We are listening carefully to what all of you have to say. I just wanted you to know that.
Mr. Berthelot: With respect to Senator Eggleton's comments regarding who is taking the leadership, I think the issue about population health is not just health; it is population. It is very broad. I do not know that anyone has the mandate for knowing that at this stage.
Population health, in itself, is a relatively young policy and science, even though public health is an old science. The population health and health disparities are relatively new. There was the Lalonde report in 1973, but there was nothing much more before that, and we can argue whether or not it was population health. It is a young science and it is unclear to me who has the mandate to take the overall leadership.
However, I think leadership is being taken in specific areas. CIHI and Health Infoway, with Statistics Canada and PHAC and Health Canada — I think it is mainly CIHI and Health Infoway — have received a mandate from the Conference of Deputy Ministers. They are to ensure that, in the development and the implementation of the EHR — and more particularly what is called the EMR, or the physician's office electronic file — we look at not just providing a system that would allow information to be shared between physicians such that they can provide clinical care to the patient but also to ensure that we think ahead. We are not that far way from those systems. We are implementing them, but this is the second wave of the major investment — Mr. Sheridan can correct me — for Health Infoway. We need to think about what are the content standards: not just the infrastructure standards and the messaging standards, but what we should collect. Should we collect ethnicity? With respect to postal code, should we validate postal code and geo-coding such that, for system and population health use, it would already be made available?
How do you take the information from those transactional-based systems and make a repository that effectively allows pan-Canadian data to be put into that repository, comparisons to be made, allow an understanding, in summary, of the great things they are doing in diabetes care, for example? They have small complications for deputies. What are they doing that other regions are not doing? In order to do that, you need a repository with a common standard.
Does that mean that the EHR and EMR should be the same across the country? No. One purpose is to organize care, and care is organized differently. There are community access centres in Ontario, CLSC in Quebec and the role of health regions in the western provinces. The way the system is organized is completely different, which may trigger a need for a specific type of information when you do a transaction at the physician level.
However, that should not prevent the creation of a mechanism — because you do not need to have a real data base — that would ensure that information is collected with some content standard to support the use of information for system use in determining what works or not in the system, but also for population health, and mainly primary health care.
There is some leadership being taken, but who has the mandate to create that population health infrastructure? CIHI would be pleased to play a role and be a partner; that is the way we work. We do not have any legislative authority. We cannot invoke the Statistics Act, but we can invoke goodwill. The information we produce will be useful, and we have been very successful, in the last 15 years, in doing so.
Someone needs to be mandated to take that lead, in partnership with the key stakeholders. Perhaps Statistics Canada is well placed because it has a census and can slice and dice it in different ways, but CIHI has effectively been, for the last 15 years, the repository of health information. We need to bring social services into the picture, but I think we need to mandate someone to take that leadership. Not another organization; we have enough. We need leadership, working in partnership more than through legislation; that is the key.
With respect to leadership, we need leadership in privacy or the public-good aspect. We have a Privacy Commissioner, but I have not seen a public-good commissioner. I know that is an image, and I know some privacy commissioners do take public good into account. I do not read everything on privacy, but I have not read a report that criticizes the fact that we are not using information we collect to make informed policy decisions, to make informed programs for the good of citizens. That role seems to be missing. We need that advocacy role.
CIHI is playing an advocacy role in terms of information, and that is why we work with partners — the provinces, health authorities and all the partners in the health care system and population health. That leadership role on showcasing why we must use the information collected on individuals to inform our debate as a society is a key to effectively improving the economy and health of the population.
This is not something new. One of the StatsCan buildings is called the Jean Talon building, because Jean Talon did a census in the early French colony just to figure out what the effects were in order to effectively plan the development of the colony. The concept of using aggregate information on individuals to make public good is really part of our culture. The census is that, but I do not see a role. Leadership needs to be established somewhere.
The Chair: We will now have a specific 45-minute discussion. Next we have Karen Dodds.
Ms. Dodds: I will come back to Senator Eggleton and Senator Callbeck's questions and then go forward, as you have asked us to, chair.
What is the architecture needed? I am not a techy person at all. When I was introduced to Infoway and had discussions with Mr. Sheridan and others about architecture and standards, I had a hard time understanding, as someone who uses information to make decisions and build policy, what he was talking about, what they were talking about with architecture and standards. I used different analogies and I think Mr. Frojmovic's is one I would also use. To me it is a question of: is it a highway or a railroad?
With the railroad, if you go back quite a bit in time, they had different gauges for the tracks, so you literally had to either change cars or do something else because you could not go from one rail company's system to another because you lacked standards. They standardized that and now you can move.
If you use video conferencing today, you are brought down to the lowest common denominator, and there are always glitches because we still do not have good standards. What Infoway is about for me is not architecture like a building; it is more architecture as in ``We have chosen a highway or a railway'' or ``We have decided it is air,'' and then the standards.
Someone spoke of data and holding and sharing. For me, Infoway is about moving and using data. It is not about holding data and having someone go back continuously to share. It is about moving and using data. If you think of the complexity of the health care system in Canada, I wonder why we say ``system'' when there is absolutely no system. There are hundreds of thousands of points of care; there were country doctors and doctors going back a couple of centuries who took notes, and that started data. You cannot hope to rip and replace. You need to do it in a fashion that is sensitive. Dr. Keon and his practice at one point had a practice of keeping data. You have to build on it. To me, that is what Canada Health Infoway has done in working with the provinces and local levels. You cannot just look to Infoway for success because Infoway needs to work with the provinces, and the provinces and Infoway need to work together at the local level.
I really appreciate your diagram. If I think of Canada Health Infoway, we are building excellent systems about the health care system. The far right will have very good movable and usable data. Perhaps a little bit will be captured about personal health status. Obviously in most areas we will know gender, a little bit about biology and genetics, and almost nothing across the rest of the continuum.
You could use the Infoway-type model and then apply it to what Mr. Smith gave me in terms of Manitoba's population health research data repository. Looking at his example, after health, the next one he has is education and then social databases. You would walk your away across some of these different boxes and ask who we need to partner with next at the provincial and local level to begin moving and using that data. You could use an Infoway-type model to do that.
There is no doubt that you need federal level activity, provincial level activity and local level activity. One of the things we all know about data is, if the person at the front-end level does not find it useful and easy, it will not work. You have to get right down to that level of granularity. For me, it is the moving and using that is important. Someone else talked about building bridges and connectivity. That is absolutely critical. Statistics Canada has years of experience, credibility and trust in terms of linkage. We can build on that.
Just to repeat what so many others have said: privacy is critically important. Many people will want to keep their personal health information and other personal aspects private. To echo Mr. Berthelot's comment as well, there is not a commissioner for public good. When I looked at what was being developed for Canada Health Infoway, and I have just been a year on the job, my assumption was that from the get-go people were thinking of all these other uses because I could not imagine that we would make the investment thinking that you would only get a return on the investment at the front-line, clinical level with a specific patient. I do not think that is what people had in mind. We do need to address privacy very carefully, but it should not stop us at all from working forward. It should just be one of those things that you take into account and on which you continue to work forward.
The Chair: In the interest of continuity, Mr. Smith, I will ask you to comment. We are supposed to break at eleven o'clock but if you go a few minutes beyond, the hook will not come out.
Mr. Smith: Thank you, Mr. Chairman. Referring to some of these comments about my prediction on it taking 20 years to understand this data, I hope I am wrong as well, but the reality is that before you start to understand it, you need to have access to the data. We do not know how long that process will take nor what privacy issues will be in place.
Getting back to your comment that you have a very simplistic view that the patient owns the data, a lot of doctors do not see it that way. They think they own the patient records. That is what we are talking about here, electronic patient records. We have to solve that hurdle. Then we need to get governments to organize that electronic record and provide it to the people who work with the data.
None of these data sources are transparent. It takes a lot of time and effort to try and understand them. Where do we find that capacity? Does it reside within the government itself? Generally, my experience has been no, it does not. Governments need to partner with people outside government because people who bring the methodology to this exercise do not often necessarily build their careers in government. They build it in academic institutions. We need that partnership there to understand the data.
We do not want to put all our eggs in that basket. To date, we have put a lot of eggs there, to take nothing away from Infoway. We have spent $1.5 billion building a new, sophisticated and important clinical data collection system, but we have not spent an equal amount of resources trying to build capacity to take the data collected in those systems and turn it into knowledge, understanding and wisdom. If there is any leadership that can come from this group, it is that Canada does a great job of building data collection systems. We have them all over the place. How can we go beyond that and build systems that will exploit that into knowledge and understanding? Where will that capacity reside?
My other point, which has been made by others, is that when we talk about the electronic medical record, we are just addressing the issue of health. If we are to look at the determinants of health, we need to build those partnerships with other agencies that do not have new and sophisticated data collection systems.
There are some models in this country for how to collect the data. We need to build a layer on top of that to enable us to mine it and turn it into information that people in small areas can use. Community Accounts is a great model and a starting point, but it will not be the answer to the entire problems. We need to focus on investing at the level beyond the data collection level.
The Chair: Thank you, Mr. Smith.
We will now change topics and discuss gaps in data and the indicators. We will also have some discussion about Aboriginal people, ethnocultural groups and the barriers to the development of core surveys.
Mr. Wolfson, you are the first speaker of this session.
Mr. Wolfson: There are three distinct questions here. For the local neighbourhood data, two main sources provide the foundation, namely, the population census and various kinds of administrative data. Health data and vital statistics are the key ones, and they are censuses in and of themselves. However, people have been raising many other issues, for example, smoking, obesity, physical inactivity and the social services.
I previously mentioned the idea of strengthening the population census, and there are two issues: the first one is data that are directly useful, and the second is data that can be used for modelling and the ability to estimate or impute at a finer level of geography. That is beginning to sound technical.
Regarding Aboriginal people's health disparities, the Canadian community health survey covers about two thirds of the self-identified Aboriginal population. We do not go on-reserve. The First Nations communities would prefer to survey themselves. That is fine, except I get a little worried about two fundamental principles from the point of view of a national statistical system. The first principle is that the data must be, in large measure, comparable. There may be specific things that those communities would want to tailor to their own needs. The second principle is that the data be accessible, subject to the constraints of maintaining confidentiality of the microdata, and be freely merged, for example, with the CCHS. Let me note that that is not happening smoothly at the moment.
As for disparities among ethnocultural groups, the census is probably the best frame we have because we have a detailed set of questions on self-identified ethnic identity. It is a real challenge. My colleague here, Mr. Sheridan, in his previous life had a lot to do with the census, and he will know better than I that it is one of the toughest questions on the census.
It is not enough to have the data. We need the people who can make it sing and dance, who understand how to do it. Universities, I am sorry so say, are not doing a great job in this regard. I was talking to folks at one university, bemoaning the lack of quantitative skills in the people coming in. Part of the problem is the way in which they are being informed, but another part of it is the question of incentives for a young person to develop good, quantitative skills in this area. There is no career path afterwards. There is a need, if we are to be talking about developing capacity, to think not only about the training but also about where the young people find jobs afterwards. Without a good match there, it is not surprising that young people do not chose to go into that area of study.
Dr. Neudorf: Looking at the gaps issue, I would agree with what Mr. Wolfson just said. Insofar as the infrastructure needs at a local level, processes are in place to try to deal with some of the data gaps, but we are seeing the development, at a local level, of population health observatories occurring in some of the larger cities right now, where there are varying degrees of linkage with the university, but they are based very much in a practice environment. Similar to what you would have in a regional health authority looking at utilization statistics from a hospital, epidemiologists, medical officers and other people are analyzing population health data and looking at best practice and integrating that data together into the types of reports that are being used to monitor health disparities, health inequalities, et cetera.
What is lacking right now is a way to make sure that all of the country is covered with those types of observatories because there is a gap in that kind of analytic capacity in most provincial ministries. In some ways, it must be somewhat arm's length from that level of government as well. It needs to be, perhaps, a three-way agreement between provincial and local-regional health authorities and the university to get the mix of skills that you need. The ability to coordinate those groups, network them and make sure that all parts of the country has access to such a network, as they have done in the U.K. with their network of observatories, would certainly be useful.
Beyond that type of infrastructure we also noticed, when we tried to do some of this work together, that the standardized data is one issue but agreeing on small area local geographies has been a surprising barrier. We can get access to census data at a small area level, but for much of the other data, there is no agreement at the sort of nested small area geographies that can be aggregated up into the next level. We have been working with the Community Social Data Strategy and the Urban Public Health Network to get that kind of proposal together where we would agree among all the cities on the useful geographies for planning and policy making at a local level. If we could then go as a group to the data providers and tell them what the meaningful geographies are for us, it could be produced at once instead of having the independent requests we see right now.
What we are also missing is common agreement on the indicators of inequality, so that if we are looking at health disparities, a variety of income measures and indices of deprivation are being used. We need to agree on a small basket of those that Canada will use, and make sure that is available across the country. Similarly, we are working with the same group as well as CPHI, the Canadian Population Health Initiative, to come up with an agreement among the research group and the local level analysts on what that measure would be.
We are also working with First Nations groups locally. We found that it is complex, obviously, because there are multiple layers to work through within bands, tribal councils and federations of tribal councils as well as the Metis groups. We found, at a regional level, that by working with an individual tribal council first and getting a memorandum of understanding around sharing of data, we have been able to see from their perspective which issues need to be addressed. They have expressed to us that there are a number of reasons for looking at Aboriginal people's health disparities. The first is getting away from looking upon the issue of Aboriginal cultural as a risk factor. In fact, as we do the analysis with them and do a more holistic approach as to what the attributable risk is in these various determinants, in most cases Aboriginal status disappears from the analysis as a meaningful factor once you take into account poverty, education and employment issues. The real underlying question is why the First Nation population is so disproportionately represented in poverty, housing problems, unemployment and so forth.
Getting back to what some of the work has shown in other countries, and from research in Canada, there is a need to look at the underlying systemic issues around discrimination, racism issues, and in some cases to target programming that may be very effective at a population level but ineffective for First Nations. We end up increasing the health disparity group, although we are successful at making improvements at a population level.
Partnership has been the key in terms of involving the tribal council locally, right from the start, not only in designing the project and planning the programming but also, as much as possible, in working with them so that the delivery of the program is being done by First Nations groups as well to decrease those health disparities.
The approach we are taking from a data perspective here is to layer and link data, wherever possible, using the self- identified data that First Nations have given to the census and administrative data bank, and to work with them on, perhaps, a First Nations controlled unique identifier where they will have control as to when and how that data is applied so that it is used in the appropriate way, and they are taking more of a leadership role.
The Chair: Thank you very much.
Dr. Gregory Taylor, Director General, Office of the Public Health Practice, Public Health Agency of Canada: I wanted to emphasize a previous point, namely, the isolation of some of the discussion. I am having trouble focusing on this because it seems to be mostly around more data acquisition than how to get more from the data. It has been mentioned a few times that we are not really taking advantage of the existing data that we have. My roots are that of the simple country doctor to which Karen Dodds alluded. I have taken a more simplistic approach over the last decade or so, trying to set up a couple of chronic disease surveillance systems. However, we could not deal with the data that we had. We were looking at cardiovascular issues and the country had 80 or 90 different databases that had value for surveillance, but we did not have the people to access that information, let alone do some of the knowledge-based analysis.
When electronic health records come online, the floodgates will be open to this data. I am not sure that we will be able to cope with that. We are having a hard enough time with the existing data, not only doing the quantitative analysis but also the qualitative analysis, which is defeated in the policy-making decision. We are not doing that with existing data. If we are to be talking about data access, at the same time we need to be talking about building the capacity at the local level, at the intermediate level and at the national level to do something with it or it will be data for the sake of data; it will not move the yardstick.
Talking about gaps, it seems that it is a gap in training, a gap in people and a gap in some of the other things that support this infrastructure as we move forward. If we do not address that, I am not sure the investment will return much.
Senator Cook: Thank you all for coming here this morning. I should say at the outset that I am challenged by the wealth of information that I am receiving this morning. You need to understand that for me personally, I am a very ordinary person sitting here attempting to do an extraordinary thing. With that, I will ask Mr. Wolfson my question that sparked my hands to go up.
Did I hear you say that Statistics Canada does not go on reserve to gather information?
Mr. Wolfson: You did indeed hear me say that, although I should probably clarify that. In the case of the population census, we certainly endeavour to go on reserves and we get about 80 per cent of the reserves collaborating. In the case of the Canadian Community Health Survey, we do not endeavour to go on reserves or on military bases or into extremely remote areas.
Senator Cook: Do they have the equivalent service — that is, do they have a person to do that work on the reserve that you do for the rest of us?
Mr. Wolfson: Health Canada has funded something called the Regional Health Survey, which is an on-reserve survey that is managed by the Aboriginal community. I think it is the National Aboriginal Health Organization, NAHO.
Senator Cook: What would be the relationship between the two entities, Statistics Canada and this new one?
Mr. Wolfson: It is weak. There is something called the First Nations Statistical Institute that has been established in legislation. The Chief Statistician is an ex officio member of the board. I am not deeply familiar with FNSI. It has been set up in large part to handle self-government issues and to collect data, for example, on reserve with respect to national counts-type information. It is a potential structure, but I am not sure. You should ask someone who knows better what the relationship of the health survey on reserve is to FNSI.
Senator Cook: Would I be fair in assuming that that is a gap in the system, from our perspective in trying to write this report?
Mr. Wolfson: I think it is an important gap, yes.
Senator Cook: Whoever wishes to answer this next question may do so. It is on the residential schools. I am a member of the United Church of Canada and I have been wrestling with this for a long time. We had the apology. We hear about healing circles and about all kinds of measures designed to help First Nations people through that terrible period of their history.
From our perspective, would you consider that what happened there would constitute, in our language, a health disparity among those people?
Mr. Wolfson: I do not think there is any question that those experiences are fundamental to health, conceived broadly. Many of the experiences had adverse effects.
Senator Cook: Does anyone have any solution as to how to approach it? We must do so. Please, I would like an opinion or two. We are dealing with a report that is for all of us. We are trying to look at the gaps in the system and how better we might serve people — all people, no matter where they live. Someone needs to help me find that road map. If we are to help each other and if we are to be idealistic, putting a healthy mind in a healthy body in order to be the best that we can be, we cannot afford to leave anyone behind. My sense is that there are gaps that we need to talk about and to address and move forward.
Mr. Wolfson: If I can throw out a couple of ideas, it is a very painful and acute example of a health problem, or a problem that does have major health ramifications. An obvious question that comes to my mind is: What interventions can we consider or are being tried? Of those that are being tried, do they work? I think this is a generic issue for all of our health interventions. If we want to understand what they are doing, we need to have a sensitive way of determining people's health status and their more general well-being, I would think, in this case before and after the intervention. The statistician in me says that I would like to have some reasonably strong empirical foundation for being able to judge whether people are feeling better off and are better off in the many aspects that are relevant.
In this particular case, it is absolutely essential that the First Nations communities themselves be involved intimately in defining those outcomes. As I turn back to being more of a statistician, it should not be just some folks at Statistics Canada designing a questionnaire. Someone who appreciates the full depth and breadth of what this has meant should be there to do that.
Healing circles may be a good idea; they may work better in some communities than others. Disentangling that, and what was the ingredient that made it work better in some communities than others — because I bet dollars to doughnuts they are not working equally well — strikes me as the fundamental question in trying to understanding this situation and addressing it.
Mr. Hollett: We had strong interest by Aboriginal groups and First Nations in the Community Accounts. Mr. Wolfson has more experience than I do; I have only seen two smaller pieces of the puzzle. Part of what I have seen there, I am seeing here this morning, in a sense. We talk about gaps without first talking about what the needs are. If you do not know what the needs are, you do not know what you have. Therefore, I would argue that you cannot really talk about gaps unless someone has a particular need that they understand well for which they say, ``Here is this need, so there is a gap associated with that.''
In general, in my view and experience, that is not the right way to start. The problem as it might relate to First Nations and Aboriginal groups is the same sort of thing. When we talk to them, as I have done so many times for many hours, the fundamental problem is that they feel that when we collect data from them we use it against them. That is the first issue.
Second, we try to collect data about these groups but we collect it from our perspective. When you sit down and you talk to them about data that they need, they all agree that health is important and employment is important, and so on. Many of the same domains that we would argue are important are seen as important, but it has to be put in the context of their world view. From our experience, it is not done that way. They do not really have very much interest in talking to you.
They like the Community Accounts and there are two reasons why they like it. First, they feel the Community Accounts is interested in the user — the receiver of the data, the people whose lives it talks about — and second, we talk about it in a broader context. We do not talk about just crime statistics or health statistics. They like the approach of talking about all the different aspects of life in those communities.
I had a discussion with people from some of our First Nations communities last week. Two weeks before that, I did a presentation in Toronto and someone started asking me questions about developing data for Aboriginal groups in Newfoundland. I consistently responded that I would never do that. I would not, though Statistics Canada could or would, for whatever reasons. However, I would never try to do that without full engagement with the community because the risk of stigmatizing would be too great.
It is just another way of saying that, from my perspective, you really have to work with them in order to be effective at dealing with them. I know there are gaps in our province, without knowing the needs — I will go that far and undermine my own assertion to that extent. We may not get every piece of data that we need now; we may get part of it as a trade-off for engagement by these various groups because they are getting data that they need, if that makes sense to you. I do not think you will have as high a level of success if you dictate what should be done in terms of data collection for Aboriginal communities if you are looking at it only from your own perspective. I think you would get more benefit for both parties if you take a more innovative approach.
Senator Cook: You said you went to Australia twice. Was there any interaction with the Aboriginal people of Australia when they were trying to do their —
Mr. Hollett: There was some interaction, but I did not connect with them very much myself.
Senator Cook: Did the country acknowledge the need or the gap?
Mr. Hollett: Yes, they did. It is a similar issue: They have the Aboriginals there who have a different world view and a different sense of values; the land is more important; wildlife and that sort of thing is the same as it is here, except for the species. The issues will be quite different in terms of social versus economic, and so on. I understand, however, that there is a key interest in having Aboriginals involved and the Australian Bureau of Statistics is being cautious but proactive in doing that.
Senator Pépin: If you want to have the full participation of that group, is it possible then to have them involved, in other words to hire them? We have many presentations from those communities and many of them have qualifications to work at different levels, but they are not included. Would it be possible for you to include someone from the Native community to be part of your work? Maybe it will be much easier after that to have them collaborate and to have access to the information you are looking for.
Mr. Hollett: People from First Nations have come to my office on numerous occasions. There are two main barriers that have kept them from moving along and having their own version of Community Accounts right now. The first barrier has been in trying to organize the First Nations Statistical Institute, and trying to obtain the resources to do that. However, they were 100 per cent on board with working with us to the extent that they asked us if we would work with them, come to their communities, learn about their culture, learn about their economy, learn about their issues and build a version of Community Accounts, modified and based upon their views on what was necessary. They also wanted us to build and maintain that for them for a minimum of five years.
It is possible to achieve trust, but it goes back to what I said: You do not just do something and say, ``This will be good for you because I think it is.'' You need to come at it from a different direction.
The Chair: We are at 11:45 a.m. and at a key point in our hearings and deliberations.
We have Senator Eaton, Michael Wilson, Jean Harvey, Vivek Goel, Michel Frojmovic and Dr. Dodds who all want to speak. Greg Taylor pointed out a few minutes ago the major development in Canada Health Infoway, the health record that will throw a whole lot of new information into the system. That is good because, if you look at our chart, even though it may be imperfect, that information will help us with the health care delivery system, the life course, et cetera. Our remaining problem, of course, is to gain connectivity in the social determinants of health.
Here is what we need to decide in the next 45 to 60 minutes. Who will do what? Who will lead? I will take a risk and throw it out there: Do we use Community Accounts as a model right across the country? I know that Aboriginal people are open to that model in their own communities, provided they have control of it. We need to have a full discussion of this aspect.
Senator Eaton, you may have wanted to talk about something totally different, and please do that, but I want to focus on this subject.
Senator Eaton: I would be happy to wait to the next point of discussion regarding electronic health records.
The Chair: That is where we are.
Senator Eaton: I would just like to throw out a general question. We talked a lot this morning about establishing standards, collecting data, how they apply and how they do not apply. I have a more practical question. How do we standardize best care practices? If we set goals for population health, how does someone in Nunavut and someone in downtown St. John's access the best standards of care in any situation? I know we have certain things in provinces, such as Cancer Care Ontario and other programs, but how do we standardize that across Canada so that if you come from a non-research-oriented community, you can still easily access best care practices?
Mr. Chair, we saw that a little bit in the pilot project in downtown Vancouver. This was not medical so much as an issue of the whole health determinants. When we asked them who else in Canada had looked at their pilot project, they said no one had asked them about their pilot project. They were getting inquiries from other countries such as Venezuela, Japan and Italy, and it seems a shame that if we embark on this huge population health study, collect a lot of data and then we cannot access it from everywhere.
The Chair: That is the object of the exercise in the next 45 minutes, to find a way of doing just that.
Mr. Wolfson, you are next. I have noticed you always seem to show up in the jaws of the whale for the last 30 years, but you always get out.
Mr. Wolfson: I should preface my comments by saying that I am not trying to answer the question exactly. However, in response to the previous comments concerning the gaps, I left out one of the obvious ones, which in the longer run is that the electronic health record and/or the electronic medical record has tremendous potential and should be a foundation stone of the information systems we are talking about.
In regard to EHR versus EMR, at the moment they seem to be distinct in various people's minds. One is the system that the Infoway has been primarily concerned with up until now which has to do, for example, with discharge abstracts or diagnostic images, or drugs or lab tests. The way I think about the EMR, and I stand to be corrected, is basically what the physician is doing in his or her office when you go in and chat. My physician types on the keyboard. She gets frustrated with me sometimes because I seem to know more about this system. The downside is that she does it all in free text and, from an analytical point of view, that will be almost useless and a major step backwards.
Right now, when a physician here in Ontario bills the provincial health care system, they need to say what the billing was for. That is how the National Diabetes Surveillance System has been put together across the country. You know the reason for a person attending the primary care physician's office. If it is all in free text, as smart as Google is, they have not figured out a way to do a text search. I have seen papers where there are 10, 20 or 200 different ways that a physician may indicate ``diabetic'' in their free text chart. We will never be able to extract that. If you have not heard about it already, there is a major worry here about a step backwards rather than a step forward in terms of losing data.
I have another point that perhaps touches on the Community Accounts as a model. Most of our discussions until now refer to the date as cross-sectional data, a snapshot for this year, next year and the year after. That is absolutely fundamental for monitoring, telling where we are, determining trends, whether things are getting better or worse. We have not talked nearly as much about longitudinal data, and in particular data that are longitudinally linked at the person level. This is implicit in this diagram of these life core stages. It is absolutely fundamental, to my mind, that we give at least equal weight to that kind of information.
This may be more a technical kind of phrase, but from a database or information handling point of view it is more efficient just to store the trajectories: I went to the doctor this day, I got a prescription that day, I had a procedure another day, I had a lab test. Those can be strung together so it is a patient-oriented trajectory and, as has already been noted, the postal code of the patient and the provider will be there. Therefore, with modern computing and some work to get the right people trained, we can look at it from the aspect of building some community accounts. We have the postal code data so we can look at procedure rates by neighbourhood deprivation index and observe, as Dr. Neudorf's urban public network has done, that there really are some major discrepancies that point to something being wrong. You can talk better than I can about what policy actions that has initiated.
At the same time, if we want to understand what works, are people better really off after their hip replacements? There is a need to look longitudinally at these people. If we want to do any kind of planning or understanding of what interventions work, we need to do that as well. A major concern I have beyond the longitudinal linking here is the way in which the EHR is currently structured. It will all be from a biomedical perspective. However, people are pointing out that there are a whole lot of other things, and part of that is linking other records, whether it is school absentee records or school test marks or social assistance records. I am worried that there is still another major gap here that I will call, for want of a better phrase, the vernacular description of health. It is one thing for your doctor to say you have hemiplegia — we actually did a focus group on some disability questions yesterday, and there was a person who came in with that — but it is quite another to understand, from the the patient's point of view, whether they can get around the community and handle themselves in house, in school or at work. Those kinds of things are not, as far as I understand it, anticipated to be on the EHR. However, if we want to understand how healthy people are and what is affecting things in their daily lives, we absolutely need some way of adding that kind of information or making sure it is included.
I will add a couple of more quick points. There was also a question before, number 7, which concerns the barriers to the development of cohort surveys. Part of it is based on administrative data. I have already mentioned that there is a fundamental issue about a willingness to share. If we are talking about collecting additional data on health status, the ability to function, key correlates, the doctor will not ask you to wear an activity monitor and determine your physical activity or inactivity. Obesity is a major driver of health concerns these days and to enter calories in, calories out, how much you are spending on one side and how much food you are ingesting. This will be expensive information to collect.
At the moment, one of my concerns — and a couple of people have mentioned this — is to what use the data will be put: Who are the users? What are the issues or questions driving it? Those ought to be the first things that one asks, and ought to drive our thinking about working back to say what information system is needed. I would be happy to rattle off a few examples.
I cannot resist throwing out one more cosmic idea, if I may, to the committee. I have been reflecting on this aspect in a different context in conversations with colleagues at the Canadian Institution for Health Research, and what I observe is that the idea of big science has been accepted for decades in high energy physics and in astronomy and, more recently, in genomics, but the idea of big science is not at all accepted in population health. In another context, I like to say that Statistics Canada is the cyclotron for the social sciences. The EHR has the potential to be the cyclotron for population health, or at least a large part of the foundation. What would really be wonderful is if we could step back and have some big thinking about how exactly are we allocating our research monies. As much as I love cosmology and the beautiful pictures that come back from the various space telescopes, I believe it would be of greater social utility to think of similar investments in population health and the fundamental science of it. There is my spiel for you.
The Chair: That is our last question, Mr. Wolfson, to deal with the research piece.
Jean Harvey, Director, Canadian Population Health Initiative, Canadian Institute for Health Information: I wanted to pull together some of the pieces I have been hearing about this morning. How we can get there has been a topic of discussion. There are some good news stories out there that we need to understand. Dr. Neudorf was talking about indicators of disparity. We did have a consensus conference yesterday where we looked at the indicators that get pulled together through CIHI and StatsCan.
There is a group through the Pan-Canadian Public Network, which is an initiative of the Public Health Agency of Canada, the PHAC, and there are expert groups associated with that. I sit on one called the Population and Health Promotion Expert Group. We have been looking at disparity and inequality indicators. That particular work from that expert group came to this consensus conference yesterday. Therefore I believe some of these initiatives are tying together nicely. Some of the work that the UPHN is doing was presented by Dr. Neudorf at this meeting yesterday.
There are a many players out there, and we have them around the table, but I think there are some good connections happening. I wanted to reinforce that aspect and the fact that I believe it is very positive. The will is there in this country to move things along.
I wish to pick up on the intervention research. There is a group in existence called PHIRIC, the Population Health Intervention Research Initiative of Canada, and a number of us are involved, such as the public health agency, the CIHR, which is not at this table but they take an active role in that particular group, as well as us and a number of others. We are committed to looking at intervention research, how we can move it along. As you talk about gaps in information, certainly one of the gaps is the intervention research. It needs to be recognized as valuable research that people do. We need people better trained in that, so we need to put some resources and commitment into the training of that and see it as an important piece to move along. There is some good work happening there, and I think the more we work together on these kinds of things the further we will get.
The report you have just received is one we recently produced in partnership with the Urban Public Health Network as well as INSPQ, the Institut national de santé du Quebec. It was again bringing the pieces and partners together. There are good-news stories out there that we should not lose sight of when looking at these issues.
The Chair: Thank you. Dr. Goel?
Mr. Goel: There are quite a few things on the table at the same time, so I will try to address a few of them. I made a notation here to talk about big science, and then Mr. Wolfson beat me to it.
Yesterday in Ontario, we launched the Ontario Health Study. It will recruit 150,000 people collecting a full range of information from the individuals across the spectrum on this chart. We will also collect community level data about where they live and environmental measures as well as biological measures, and store specimens. It is part of an initiative that is also similar to studies with common core data sets in, I think, Quebec, Alberta and British Columbia. It is an example of the big science.
I would point out that CIHR talked about doing this for years. These studies across the country are happening despite CIHR. You are absolutely right: there are other communities, such as physics and astronomy, that have figured out how to get those big science types of projects funded, and we need to show how that can be done here.
I would distinguish the cohort surveys under number 7 from the question under number 9 on intervention research. This is part of getting your basic population health information. As Mr. Wolfson said, we will get it in a variety of ways. We need those kinds of studies, which will be like the Framingham Heart Study has been for us for the last 50 years. There has never really been anything like that in Canada. It will take many years to generate that kind of data. There is what is possible with administrative data sets and linking surveys and so on, which we have had various attempts at, and then there is what will be possible in the future with electronic health records and being able to track individuals through their trajectory. We need to ensure that we build the infrastructure across all those aspects as well, and hopefully we will come back to talk about the intervention research piece.
On Senator Eaton's question, I think that is a very important part of all of this discusion. It is not just about getting more data or even more information. It is about getting the knowledge attached to that, the knowledge synthesis that the population health initiative does so that when you present a report, you also present the strategies. That works at the individual level as well as at the community and population level. We know from lots of experience that electronic medical records are only successful for implementation if you add value for the primary user.
My family doctor, Mr. Wolfson, has a system where the Canadian Task Force on Preventive Health Care recommendations are built right in. Based on age, gender and family history, the first thing she has is a list of what is recommended for that individual. You can have drug interactions and allergic history, and so on, come up at that point in care.
For this discussion, with a Community Accounts type of model, we need to think about the fact that if that user goes in to look at what to do for health and a certain risk factor in their community, not only are they getting the data but the knowledge synthesis is also popping up. I know the Public Health Agency of Canada has done a lot of work on this, as have other organizations. We need to build on that knowledge infrastructure to go along with the data and information infrastructure.
The last thing I want to comment on is this issue around training and personnel. It has come up a few times, and I will flip back to my previous role as a provost and vice-president academic for the University of Toronto. It is a challenging area in which to train people. You need to draw from many different disciplines. As Mr. Wolfson said, it is hard to show people what their career path will be. They can become an anthropologist or an economist; there are so many different places people draw from. You want to have that kind of education. The more we can do in creating these big projects, the more we create the opportunities for training.
I would also comment that in my own work with graduate students, I have seen a lot of them get frustrated when they try to work in this area. You try to do your masters in a year to a year and a half and you spend 16 months getting your data. Lots of attempts have been made to improve access, and so on, but we turn off a lot of our students when we get them into these areas because of the hurdles that they face to get their work done.
Mr. Frojmovic: My comments are mainly about this question of leadership, but I would also address the data gaps in this context. I agree, in the world of administrative health data I am a non-health practitioner, so that is my perspective. My sense is that we do have a lot of data and it is more a question of accessing and organizing it, and so the investment in collecting more is not really the issue.
That is a perspective on the 25 per cent box at the far right of the spectrum. If you look at a lot of the other boxes, we do have some pretty fundamental data collection issues. Speaking as a data practitioner in the municipal world, I cannot tell you today how many people have used a shelter system among our homeless population in Canada, by city. We have a database in place trying to collect that information, but we do not know the answer to that question.
We were trying to understand child care for a while. We cannot tell you very much about the child care system. As I found out two weeks ago, Industry Canada took a decision a few weeks ago that they will no longer try to report on individual bankruptcy by municipality, let alone by smaller subset. I would imagine that a personal bankruptcy might have a pretty disruptive impact on one's health. However, we just don't have that information.
There is one thing in having data collected, but there is an investment needed in how we use that data. We seem to still be falling into the trap of investing our efforts in that 25 per cent of the health care system from a data point of view, and there is another 75 per cent that needs to be reflected, and in some cases it is about a basic collection of data and a basic understanding of what is happening in that environment. We cannot lose sight of that.
The leadership issue related to that is that there is a danger coming out of the health care system box because there is a tendency then to focus on that world. Box-wise, it is the single largest box, but that is probably because you could have broken out the health care system into many smaller boxes, just as the social centre has been broken out.
Wherever the leadership comes from, it must represent something more than just a box. I would need to be convinced why Statistics Canada should not provide the leadership at the level of data. There may be compelling reasons why, but that would be the starting point for me, rather than focusing on the health care system providing the leadership, because then you will lose sight of all these other determinants, the non-health care system determinants.
That brings me back to the point raised earlier about investment. If we are looking at transformative investment in infrastructure in this country, it is not about roads and bridges. That is really continuing old models. They need to be maintained. Suburbanites — God love them — need to get into the cities for their jobs. You do not want to sit in traffic, but that is not the transformative kind of investment we are speaking of that will change this country. We need leadership on this type of investment, building the data infrastructure, working with the existing data sets we have, accessing them better, collecting more basic data on a range of issues. Whether it is homelessness or bankruptcies, there are many other issues in the social sector. Social housing is another area where we do not know all that much about it. We need a broader perspective.
In the U.K. they moved the responsibility into the Deputy Prime Minister's office. Over the break, we were trying to figure out what the equivalent would be in Canada. There does not seem to be one. They did that in the U.K. because they needed that broader perspective. As a non-health practitioner, my main comment is that you must be aware of getting yourself stuck in that 25 per cent box.
The Chair: That is a very good point.
Ms. Dodds: Going back to the senator's question, I want to note that the issue of mental health has not been raised this morning, and mental health is a critical issue. We now have the Mental Health Commission, and hopefully they will make progress in their goal of removing the stigma attached to mental illness.
Many of the interventions that people have used to date are related to health promotion and disease prevention. We do not have many interventions that are not simply treatments in a biomedical model: Take this pill; take this medicine; do this kind of physiotherapy and you will become better. The interventions to date for early childhood development and such things are more to try to prevent something or postpone something rather than, having experienced the trauma, such as residential schools, determining how to help you heal.
Residential schools are not the only example we have of something like that. We know of all the military people who are suffering from post-traumatic stress disorder. We do not know what will work and what will not work.
Mr. Frojmovic just talked about bankruptcies. We know that the economic depression of the 1920s had a huge impact on health. We do not know what the time course is and what the required interventions are. We need more understanding of what kinds of interventions — which are not strictly biomedical — will work.
We do have evidence that two things will help First Nations, regardless of the situation. One is including them, and one is giving them control. There is evidence that in the health area, without doing anything biomedical, simply doing those two things improves the health outcome. We do not know what kind of causality there is. However, we know that if you involve them and give them control, health outcomes will improve.
The place of electronic health records on your agenda concerns me. I do not think we should make them broad enough to cover your determinants of health. It is big enough to cover the 25 per cent that is the health care system aspects, which will include a few other things. When you are looking at the other determinants of health, you are very right in saying: Who should collect; who should access and who should use? Should a population health organization be the primary collector of education and social data versus StatsCan, which already has a mandate to collect some of that, and your Community Accounts, which is already doing it? Instead, the question is: Who makes them connected; who has the ability to tie them together? I would say: Who collects, who accesses and who uses?
To return to my first point, collecting the data is enormously expensive. Even though we point to our investment in Infoway, that is not nearly as expensive if you add up the cost of the hundreds of thousands of points of delivery.
Dr. Neudorf: Just to reiterate, the need that we are talking about to improve population health is for very broad- based data at a local level. I cannot stress enough the number of times I have seen very well put together national studies that have no impact at a local level. However, if you make the same data available at a local level with locally understandable geographies, suddenly people are moved from the heart to change.
I was at a conference in the U.K., where they have taken a strong national stand in trying to make a difference. They have said that you need the two-pronged approach of political will to make change and public support and understanding of the issue. In the case of Saskatoon, I have seen that presenting the data in that meaningful, local way has resonated with both of those arms and has created the necessary public dialogue to start talking about program and policy change.
In order to get that happening, we need to have very strong federal and provincial support and priority for this to get those ministries together to say that we do need to share this data.
Why do we need to do that? To make the argument that this is necessary for overall betterment and well-being is very good. The U.K. has introduced the concept of health equity audits. It can be called different things in different countries. The concept is to consider, as you introduce policies, what the impact will be on population, well-being or health. Some are getting away from the term of ``health'' because of this concept of 25 per cent of the system driving what we are really after, which is well-being.
Once you have that priority level, you need the coordinating body. Someone must provide that coordination. It is not necessarily collection or ownership; it is coordination that is required. It is important that the body that is bringing it together on a pan-Canadian basis not be introducing new barriers to the access to the data. This is fundamentally about data liberation; about facilitating access to data.
We have found that it is very important to ensure that the infrastructure and tools that are provided to access the data are meaningful for those three types of audiences: the community as a whole, the policy analysts and decision- makers, and the researchers. Each of those need a different look to the data and the access, but that does not necessarily mean you must have different systems. It can be based on a common architecture model.
Saskatoon, the Community Accounts program and the Manitoba centre have each done many years of work with those audiences to determine what types of access and functionality they need. If we can put that together, I think we can find a way that will meet the front-end needs.
I want to respond to the issue of the health system collecting the data. That is definitely not where we want to go. We tend to have the largest capacity as a group in terms of the analysis and infrastructure investment. We are not collecting the data, but we may have the capacity to connect the data.
In Saskatoon the investment has been made in social services, education, justice, et cetera, to do data collection for their own administrative purposes. We are designing a system that can get out there in a distributed database model. They have data ownership and control and agreement on who can access for what purposes. Your role at a population health level is to connect it and ensure that the right types of users have the right types of access. That is what we need to focus on.
The Chair: Thank you very much.
Mr. Smith: Dr. Neudorf has eloquently stated one way to bring several of these different initiatives together. Coordination of that capacity and bringing it together would be useful in moving this agenda forward. I think he stated it very well.
Mr. Berthelot: To build on what Dr. Neudorf said, you asked if we all agreed with Community Accounts. With regard to Canadian community accounts, I think they need to be local. People must have ownership of the account, and it must contain information in order to be actionable.
I fully agree with Dr. Neudorf: We should not collect data that already exists in other fields. The challenge is in coordinating the action and in trying to come up with what I would call a minimum core standard, on a pan-Canadian basis, that would allow communities in Saskatchewan to compare with communities in Newfoundland. We need local information. We do not need a lot of information about cod fisheries in Saskatoon, but we may need that in Newfoundland. This is reality. We need local information.
If we acknowledge that there is a need for a coordinating mechanism, who will take the lead? We need to find an organization that can be a catalyst, and that is a challenge. Around the table here, most of the organizations — except perhaps the Federation of Canadian Municipalities and the Rural Secretariat — are all health based. Even though we have all been successful in our areas, there will be a challenge to bring in education and social services. Dr. Neudorf has done this in Saskatchewan, but on a pan-Canadian basis it is a much bigger challenge. We need to convince the governments of the benefit of bringing in education information in terms of a population health perspective.
We should not underestimate the challenge. We need some type of a catalyst, an organization that will bring together the people who can acknowledge that this information is required, not just by the health sector but by other sectors, and come up with some type of minimum data set or core standard. That is a challenging task.
I cannot tell you who will do what, nor can I tell you who will take the lead. I can just tell you what we, as an organization, have done in the past and the role we have played in the population health sector. As an organization, we have played a role in promoting standards and in consensus and framework building, in collaboration with partners such as Statistics Canada, Health Canada and provincial ministries of health. As an organization, that is the type of role we can play, helping to create a standard for infrastructure. There are probably a lot of other partners that would be involved.
Mr. Wolfson: I, too, will not provide an answer on who will take the lead, but I will reflect on a couple of other sectors. There is no federal department of education. The closest we have is HRSDC or Service Canada. I spent a number of years worrying about our education statistics program. The federal-provincial tensions there are, shall I say, less satisfactory or worse when it comes to data collection.
Sharing data in the education area is potentially very frustrating. I remember at one point wanting to obtain absenteeism statistics from the schools. They basically wrote over the absentee rate every year. They did not keep the data from year to year.
On the other hand, Statistics Canada, for years, has had a tremendously successful model in the area of justice statistics, the analog of the Conference of Deputy Ministers of Health. The justice deputy ministers get together twice a year and, for an hour or two at each meeting, they put on a different hat, called the justice information or statistics group, and they work with the Statistics Canada folks.
The justice deputy ministers have recently made a wonderful evolution to saying that we should have micro-data and we should be able to collect the court data, incarceration data and arrest data so that we can do the analog of the patient trajectories and understand what is going on in the justice system.
Housing is another area that is fundamentally important. Statistics Canada does not play a huge role beyond, for example, collecting basic data in the census, which is largely CMHC data.
Given the conversation of the last few minutes, each of these areas are in different places in federal-provincial relations and in the development of pan-Canadian structures. To try to draw this conversation to some useful conclusion, I wonder if the better part of wisdom is to say that we ought to have some sort of prioritization — we cannot move on all fronts across the diagram at once — and pick the areas where progress is most likely to be good in the short to medium run, and hope and expect that, by demonstration and production of useful results, the other sectors will see the light and realize that they need to come on board. However, we should not expect this to happen all at once or in parallel.
Mr. Sheridan: I want to return to the question of what can be done to optimize the EHR clinical data. There are many opportunities here. I go back to Ms. Dodds' point about the track and the gauge on the railway, which is a good example on that piece. We need to push the agenda forward on that, and we have come a long way. We have standards in place on what is to be collected, but there are many additional pieces and there is the question of what else we need.
How the data is recorded and stored is critical for us. We have more work to do in this area. I take Dr. Taylor's comment on this. We have new data, and we will have lots more. How do we cope with that particular piece? Quite frankly, I do not think we are ready for that at this particular juncture, but we need to get there and we need to get there fairly quickly.
Part of getting there quickly is the existence, or non-existence, of what we call clinical data warehouses. I do not want to get into too much detail or technical specificity, but these data need to reside where they are not actively being hit continually as a clinical database. The data need to be extricated and put somewhere where the big science guys, people like Mr. Wolfson, can unleash that corpulence of IQ on these data sets in order to make them say something for us. This includes bringing these data into a clinical data warehouse where we can start doing the linkages we need to do with other databases and other information systems. That is a step we have not yet reached. We are exploring opportunities on how to move forward on that step with the jurisdictions.
Is it important to bring surgeons, like Dr. Keon, on board? Canada has probably next to the worst utilization of electronic medical health record systems in clinician care in physicians' offices. We are at 17 per cent. Countries such as the United Kingdom, Australia, Sweden, Denmark and the Netherlands are up over 90 per cent in terms of utilization. We have a big step to take there. We will start working on that, but it will be incremental.
Aside from the fact that Mr. Wolfson will be telling the physicians of this country that they should not be using free text, I think there are real issues there in terms of convincing the physician community and the associations of the utility of these electronic medical records, not just in delivery of care but for the potential of research. There is a significant amount of work to be done there.
In order to optimize the EMR and EHR data as it stands now, someone needs to have a discussion with the citizens of the country as to the utilization of this data in order to get some of these privacy issues off the table. In a survey we conducted, Canadians told us that they think electronic medical records and electronic health records are extraordinarily important to improving their health care — over 90 per cent on that particular question. Yes, they have some concerns around privacy, but they are not huge concerns. The issue is improving health care, and I think an engagement needs to be made with the Canadian citizen.
An area that has been a bit foggy for me up to this juncture is what the research community really needs and wants in terms of the data and information to pull to optimize their research and their big science on this particular piece. We have seen a shift in dynamic from big science to the consumer. We are now seeing the consumer wanting a say in how his or her health care is managed. I think they want to be part of how their health evolves and devolves as a consequence of chronic disease management and how they themselves can better manage that.
Another important step in this process of providing information to citizens to engage them in this process is the notion of patient portals and consumer health solutions. These tools can be put in place to help the individual manage their own health care.
Mr. Hollett: I do not have an overall concept on how you need to proceed with this, but I will make comments based on my experience.
In order for something like Community Accounts to work, you need the proper level of support. That means providing data to a variety of users, but our main focus has been on citizens. Going back to what Mr. Berthelot said, you need leadership and the official structure — ministers and deputies — behind this. I believe the pillars of this initiative would be supported by federal, provincial and territorial endowments. Although Statistics Canada has a variety of data, the most important data is coming from the provinces. The greatest use for this kind of approach will come from the provinces because that is where the people are. Where the people are located is where the problems are, and where the problems are is where the measurements need to be to reach the solutions.
I agree with Mr. Wolfson in terms of empowering people to help themselves. You need to have input from them in order to do that. Mr. Wolfson can have a database the size of the CN Tower using the best technology, but someone must have a need for it. A group needs to be established, possibly led by CIHI, with a mandate to do this in a non- traditional way. In other words, try to understand what needs to be done and work with people to do it, but do not be constrained by past practice.
I noted this morning that we talk about population health, but the only data sets we really discussed relating to population health were health data. That is only one piece. Population health needs to address education, income, population dynamics, et cetera. If you are to bring it together with a health promotion approach, it requires the involvement of a variety of groups, including one to begin putting this together that has the agreement and support to approach the issue in this way. In my experience in working with bureaucracies and the provinces, it is very difficult to squeeze a little pathway through the massive momentum that exists. If you manage to create a path, the best that will happen is to come out intact before the momentum continues.
I think you are trying to do something new, although it is not rocket science. We have been doing some form of this for a number of years, and we are still alive. It is achievable and not too dangerous. However, you need to have a group empowered to have that mind set. It is absolutely critical to define the products. What a person in Come By Chance, Newfoundland needs to look at their situation from a health promotion perspective is not what someone in the health sciences needs who is considering whether a patient needs a brain operation. This is not to say that there is no relationship between the two, but a different set of needs is involved.
You need to think carefully about defining the products. The approach we took in the beginning was a little heavy- handed, I suppose, because we had to move quickly. In our experience, if you ask people what they want, they do not know what to tell you. However, if you put something out there for consideration, they are productive criticizers. As long as you do not mind criticism, you can turn that into something useful. We provided a proof of concept and asked them to tell us what was wrong with it. Everything we have done since has been based on critical feedback, both from within our own group and from people outside.
With an approach like this, there are a number of steps: get the support; take it forward with a group empowered to do the work; determine the right steps; and put a proof of concept out for consideration. Part of the engagement can be from communities — I am not defining them at the moment — to tell you what they think is needed. Provide a set of data to allow people to say, ``I do not like that, but I see you are giving us something that may useful in a narrow sense, or maybe it will be useful during the course of things.''
I have had people come to me, year after year, asking questions. We have been at this endeavour a long time now. If you do not have support from the top, forget it. For me to talk to someone who does not have the support of the premier or a powerful deputy minister, is simply me being nice. That is all. I could say they are wasting my time, but I will not.
You need to follow those steps and create an innovative footing so that people can do something different. Build on the work that Dr. Neudorf and I have done. Take it and see what is there that is worthwhile. I have a bias; I like what we have done and we find it works. We also believe we are doing the right thing. The direction in which we are going with the conceptual framework is the same as that percolating among international academics. It reflects the data from the perspective of practical application.
Start with what is there; put a group like CIHI in place to provide leadership and see how you can do something innovative to create something different that produces something quickly.
The Chair: Why did I get involved in this? I will tell you why. I was a heart surgeon. I built a multimillion-dollar heart institute in Ottawa. It is one of the best in the world. As my career unfolded, I had the wonderful experience of operating on people who would be dead within hours if they were not operated on. They are walking around the streets of Ottawa 30 years later, and they are very grateful.
However, I realized that this would not get the job done. We are not improving the health of our population in the way that we should be. Although I was a heavy user of taxpayers' dollars when I was running the Heart Institute, I also realized that we are not getting the bang for our buck that we should be getting.
Canada spent $170 billion last year on the health care delivery system. Fifty per cent of the people who come into that health care delivery system have totally preventable disease. Let me give you an example. Melanoma is totally preventable. By the time it metastasizes, the patient will cost the health care system between $100,000 and $200,000 before they die within two or three years.
Somehow, we have to come together. I think it is the responsibility of people like me, who have been in the health care delivery system, to come together and bring about the change that will give us better health in Canada, better well- being and better productivity. They are all in sync. That is why I always include productivity with health and well- being.
Here we are, trying to decide. Mr. Hollett, you have the mouse trap, and this should go across the country. However, we will not sell it to everyone. For example, I am not sure that British Columbians want a Newfoundland idea. I hear someone saying that yes, they do. Good. You got me again.
The concept, in particular in respect of Native peoples, must be sold at the community level or we will never get the job done. It comes back to mustering the political clout. Who will be the big beneficiaries of this project if we accomplish it? It will be our health care delivery system. It will pull half their expenditures out from the front end if it is successful. On top of the health care delivery system, who are the real winners? Canadian taxpayers.
I do not apologize for running overtime today because we have to complete this discussion and put it in our report. We have been studying this subject for more than two years. We need the Prime Minister, a cabinet committee, all the premiers, provincial cabinet committees, committees at the municipal level that correspond with the cabinet committees and, most important, community committees that deal with the kind of data you can churn out. This will allow communities to take control of their own lives, their own well-being and productivity, and to improve it because they have pride in themselves. I have seen the colour of your dots change in Newfoundland because the communities were proud enough to change the colours, not because of the money pumped in by the premier. Maybe it had something to do with it but the main reason was community pride.
I do not know whether it was Dr. Taylor or Dr. Neudorf who made the point that if we are to create a data bank, we need to have people with the muscle and the manpower to get it up and running. We do not want to reinvent the wheel. I have felt for the last couple of years — and this is the first time I am making it public — that we need CIHI. I do not think Statistics Canada can do it, Mr. Wolfson, because your operations are too complex. You are into too much, I think.
We need to settle this point now. The big criticism about going with CIHI is that someone will say, ``Here they go again. They have the health people deal with an issue where they only have a 25 per cent interest.'' The problem with having Statistics Canada do it is that they have been into this kind of thing for so long and they have big problems with privacy and other issues that might tend to handcuff them, in a way.
It is not often that we have this much brain power around one table, so please tell us today where we have to go.
Mr. Goel: Certainly, I would agree with your recommendation. It is not simply whether it is health versus broader statistics because the other critical part is the federal-provincial-territorial partnership. Much of the information that needs to be brought together is at the local and provincial level. This has to be done with community involvement and there must be respect for the way in which information is brought together in the various jurisdictions and provinces.
It is also important to come back to the point that I made earlier, which we talked about on databases and information. In respect of the challenge that you pose on how to address population health issues, certainly we need the information and the data but we also need to disseminate the knowledge and ensure that leadership is in place, starting at the most senior level — the Prime Minister or the Deputy Prime Minister — at every jurisdictional level to take on this issue. We had our experiment in Ontario with the Premier's Council on Health Strategy, which lasted for two governments and then disappeared. We can collect data forever and continue to show the disparities. The knowledge is in place to begin taking action.
The Chair: We keep saying that we do not need more data; we need action.
Dr. Neudorf: Certainly, I agree with your recommendation as well. To reiterate from a local level, when we came up with this idea in Saskatoon, we started calling it a comprehensive community health information system. It was quickly challenged by the rest of the sectors who said, ``We know what you mean by `community health' but it still has the word `health' in it, and we want a comprehensive community information system.'' Therefore, we dropped the word, although it did not change the model. It was important for the identity of the system so that people could see that this was about not only health but also well-being and other terms that they used.
We learned quickly that the genesis of the idea is in our Saskatoon regional intersectoral committee, which is a local- level group with all of the human service sectors, community agencies and tribal council. They asked health to take the leadership role in convening and coordinating them and pulling the idea together because we had most of the investment in the infrastructure, analysis and the experience in bringing diverse health data together. They maintained ownership of their data and, more important, they gave us the idea of what data they would need to use from an education, social service and community agency perspective.
It is not an insurmountable obstacle to have a health-related group take the leadership role as long as the other groups know that they have not only a vested interest but also ownership of it and that it is being made in such a way that health as well as all the other ministries can see how they are able to work together toward the betterment of society.
Mr. Berthelot: We have to be careful. Your proposal seems to be giving a mandate to CIHI. In your statement, you talk about the database. We need to be careful about understanding that there is local need and there is need for local ownership. The CIHI role could be to help to facilitate the creation of a framework and a consensus across the country, which will be a challenging task. However, we cannot forget Statistics Canada, which is a key partner. We must work with Statistics Canada, regardless of who takes the lead. Statistics Canada is the national statistical agency and has a great deal of data that we need to harvest and utilize.
With much more data coming in, we could do much more and not wait for two years. Many things could be done with what we have. Statistics Canada has to be part of the picture because they have so much information on so many sectors, including the census. However, in terms of the comments made about the federal-provincial relationship, CIHI is an example of where things are a bit outside an official relationship. We work more with partners. We have bilateral agreements with all the provinces. If this becomes held beyond that, we also need to have that discussion to make sure we get the buy-in. If we do not get the buy-in from education and social services departments to work with the stakeholders and identify what the needs would be for education and social services, we will be setting ourselves up for failure.
It is a possibility. It is something we are good at, but we need to be careful about what we are asking CIHI to do. We cannot do everything.
The Chair: If you are whipped hard enough, you can.
Mr. Wolfson, how many times in life have you told me I am wrong? If I am wrong here, tell me again.
Mr. Wolfson: I am not going to say anything about whether you are right or wrong. Instead, I want to suggest that it is important to make a distinction among three kinds of things that are on the table now. The first is where various kinds of data are held, and how accessible they are. Second is the leadership with respect to the way in which data ought to be collected — the vision, the architecture — and working with all the key constituents who must cooperate and come to share a vision for anything to happen. Third is the realm of commenting on policy. Both CIHI and Statistics Canada share the characteristic that we do not do that. There have been a number of discussions at the CIHI board over the years and that has been continually reinforced.
We are not talking about policy here, that should be clear, and I think policy is an important question. There needs to be also a pan-Canadian and pan-sectoral locus that gets into the policy question, not directly saying your policy is great and the other policy is no good, but in terms of saying how do we judge — let me leave that aside.
I think CIHI definitely has a better structure with its board in terms of handling the federal-provincial area in health. The data repository business is different. Statistics Canada has several unique, comparative advantages. We do have legislation. We do have an excellent history and capacity in record linkage, which is fundamental to much of what we are talking about.
We have talked mostly about administrative data sets here, whether it is the current health care records, the emerging electronic health record or social assistance data that are not being put together at a national level generally but are in some provinces. However, let us not forget that most of the population health data that really is population health is coming from things like the Canadian Community Health Survey, and shortly, from the Canadian Health Measures Survey.
In the area of education, to take another example, we do struggle with the provinces to get basic data on enrolment in community colleges and universities, or to get test scores. Lord knows when we will ever get those from the secondary school system.
On the other hand, if you look at where are some of the most important advances in our understanding of the dynamics of young people — who goes to university and why — it is coming from the Youth in Transition Survey combined with the Programme for International Student Assessment, or PISA.
Understanding cannot drill down to a local level because the sample size is not big enough, but having that understanding is fundamentally dependent on Statistics Canada's survey capability, which is unparalleled in the country.
Last but not least, on the data holding part, I got a chuckle the one time I mentioned that some people think we are data huggers. We are concerned, as an organization, about really doing something and making a breakthrough on making available not just the tables or the things you can see on the Internet but the microdata available to bona fide researchers.
There are two ideas I will mention. First, we are actively pursuing real-time remote access. Our hope is that the software can be made smart enough now that we can actually do that — log on from anywhere in the Internet. If you have the right token and you are a good person — that is part of it — we will have software that will filter the incoming requests, run them and filter the outgoing stuff and try to ensure it is all non-confidential.
The second thing, which I would not recommend thinking too hard about today, is that at some point it might be useful to reflect on the idea of opening up the Statistics Act and saying: should we create another category? Right now, you are either inside Statistics Canada or you are outside. The idea around this is should there be something like a designated researcher or a dedicated analyst? The reason we would want to think about that is to ensure that we would have some sort of criminal sanctions that would be enforceable if there is a breach of confidentiality. We are talking about extremely sensitive data here. We need to be able to draw a clear distinction between those folks who really do have a need to know and the bona fides that have been properly established, and everyone else. We could enter into a contract with a designated researcher/analyst, which would address the data access problem.
CIHI and the board could grow into a broader role. That is a comparative advantage on their part. Neither of us should be getting into policy, but it is really the policy issues that ought to be driving the kinds of data and information systems that we are developing. Statistics Canada already has this tremendous comparative advantage in record linkage, the ability to assemble the microdata and the surveys.
I will add one more thing. Just so we are clear: CIHI and Statistics Canada are, to some extent, both asking the provinces for administrative microdata. What we are asking for lately, which has proven to be challenging, is hugely more sensitive than what CIHI has been asking for. We have been asking not only for the anonymous, no ID on them, health care records, we are asking for everyone's name and address — the patient registry.
Why are we doing that? Without it, we cannot link the 500,000-plus CCHS records — and coming up, the health measures record. We should not be surprised if that is taking longer and raising more questions. It is the inner sanctum, or the Crown jewels — the most sensitive part of the provincial health care record systems.
The Chair: You two people have to solve this aspect.
Mr. Berthelot: We need to ensure that there is no duplication of effort between CIHI and Statistics Canada. The Statistics Act is one way by which the data can be housed, securely used and protected. CIHI has been working for 15 years, and we have very sensitive data and other mechanisms, such as public health agencies and urban public health networks. There are other mechanisms and all of them have pros and cons. The Statistics Act is strong in terms of protecting the information and the privacy, but there are some issues about getting access to data.
As Mr. Wolfson has said, there are some activities that must be done by Statistics Canada. For some activities, maybe it is CIHI. For others, maybe it is the provincial minister of education. We need to come to the table with an open mind about the responsibilities and finding the model. We need to come up with new ways of doing things, and we need to come to the table with that in mind.
We should not duplicate any activities between CIHI and Statistics Canada. The Chief Statistician is a member of our board, and we work hard to ensure that there is no duplication in terms of collection of data.
In terms of views, there are more analytical and policy questions that need to be answered than there are analysts in the country. Having many people working on specific topics is fine, but in collecting information we should make sure that there is no duplication of effort. We should make sure that what Canada Health Infoway is putting on the field with the EMR and EHR, if it does substitute for some of the data we collect now, is acknowledged when it is at the proper stage. That is our responsibility, as pan-Canadian and national organizations, to make sure that there is no duplication. We must work together here. It will only work if we work together.
Mr. Frojmovic: A great deal seems to be potentially at stake here. Maybe it is a case of definitions. What do we mean by saying that Community Accounts or another model is good for all of Canada? In terms of leadership, what do we mean by leadership?
Statistics Canada, from the point of view of people like me who work with data, is a vital part of our national landscape. There is an opportunity here to invest in that, and Statistics Canada's organization seems to be at a crossroads.
On a practical level, we are trying to get vital statistics for 2004 on municipalities, and we are being told there is nothing available beyond 2003. We find that absolutely deplorable. If you are telling us CIHI can do it better, I suppose we can live with that. However, what we probably believe is that there needs to be a greater level of investment and support for Statistics Canada to allow something as simple as vital statistics to be up to date within the last six months. Having to wait, as we have in our case, for stuff that is now six years old seems totally unacceptable.
With respect to leadership, from the dialogue that was happening between both CIHI and Statistics Canada here around the table, it sounds as though there is a sorting out of who takes the lead in what. However, saying that Statistics Canada is too complex or there are too many limitations with it, the answer seems to be to address those limitations and strengthen their capacity, rather than saying we should let someone else try it. There is an opportunity here to further invest in Canada's statistical agency. That seems to be, at the end of the day, an opportunity not to lose. CIHI may have a leadership role, but let us define what we mean by ``leadership'' and in what context.
On the question of model, as a user of Community Accounts, there are different things going on. There is the model of the conceptual framework, the model of the ability to bring together all the disparate sources of data into one place, and the model of the software and the web-based interface that is used. Each of those potentially has applications elsewhere, but, again, as to which is best applied everywhere, we need to be more careful.
So far as the ability to collect data is concerned, that is particular to certain provinces. They have done it well in Newfoundland, but that is not simple to replicate. The interface will vary from place to place. The framework itself may or may not be the thing that other Canadians would want. We must be clear on what aspect of the model is being replicated and what we mean exactly by leadership because much is at stake. We definitely want to make the right decision.
Mr. Smith: I would agree that we need some sort of leadership from the top — the federal government, CIHI and Statistics Canada — but I would disagree to some extent with how we are focusing this and the direction in which it might go. Much of this data is collected within provinces. Knowledge around understanding that data, the implication of the programs and how things have evolved in understanding the data is there and on the ground. Transferring all of that local knowledge and expertise to a central agency will probably be very impractical.
Second, I believe that the local players want to be involved in the process. We run into this with the Aboriginal communities as well when we talk to them about delivering information to those communities. They do not just want us to do the analysis and dump a report on the doorstep. They want to be part of the process, and the provinces also want to be part of the process. We need to include them in some capacity. They have local expertise and universities with whom they have relationships, and they want that leveraged in some capacity.
The federal government and national organizations such as Statistics Canada and CIHI can provide leadership on how you people out there in the provinces will do this. They can provide information on capability, technique and organization and can facilitate coordination between groups. It is very similar to the kind of model that Health Canada adopted under Dr. Taylor's leadership. When Health Canada wanted to develop a national diabetes survey, they did not try to collect all the provinces' data. Rather, they spread the word on how to do it and, through that process, collaborated and got that information. That is very healthy for this country because it develops capacity in all ten provinces and two territories, and it involves people at the local level. That is the kind of leadership we need from the top.
Mr. Hollett: It is critical that the provinces be involved. Part of the problem I have seen over the years, as our province's Chief Statistician, is the fact that too much is happening in Ottawa. We are inadequately resourced locally, and the way things have gone, especially in recent years when HRDC had the problem and everything tightened up many fold, it caused huge difficulties in terms of the opposite of what we want here, and that is more data sharing. We got less data sharing and, of course, Statistics Canada was cut off in the cost recovery process, which did not help at all. Big federal departments or the Bank of Commerce could afford the data but, for me, we spent a lot of money with Statistics Canada; however, it was half money, half blood.
The provinces have to be involved because it is time for them to become accountable on this issue and be participants. Ottawa is not directly responsible for the well-being of every person in every community. This is partly about making people more responsible for themselves and empowering them to help themselves. They cannot do a brain operation but they might learn some things from the information, with a little help, to avoid such circumstances.
I would like to see, over time, the provincial and territorial statistics agencies being partners in this project, and those who are able and have a role to play could start being what they were intended to be in the first place. The basic governments are there, so you would have CIHI, Statistics Canada and each province and territory being an actual partner. If you go that way, and this is also integral to the approach that this committee and the federal government would take in the implementation, you want to get premiers involved so that they understand that something new is being done and that they need to be involved. Without that support, it is difficult for provincial and territorial governments to do a proper job, and if they are not doing a proper job, you are right back to where you started. You could have some data, but nobody is using it.
As for talking about what we do not have, we must start with what we do have. If we waited until we had everything or some unique or esoteric data set from linked data files, we could be waiting for five years when, instead, you could have something out there in probably a year or 18 months. If you take the Community Accounts — I am not saying this from a sales perspective — and you want to get something out there quickly, Community Accounts is ready to roll. We have been migrating in information for each province. For those of you who have not looked, you will find it is incrementally becoming a lot of information for other provinces. It is a matter of moving ahead with that.
A great weakness that could be embodied in this exercise is getting hung up on what is not there, which is a sacrifice to getting information that is there. In terms of the Community Accounts framework, it is a matter of emphasis. What is in Community Accounts right now will not do the job for First Nations without modifications. It is the same as if you have data for Vancouver in that you would want to modify it based upon what is important to Vancouver. You will not build up the fisheries sector for Toronto in the same way.
It is true that that sort of thing needs to be looked at, but a huge amount of potential is there for just moving ahead and getting something out there.
Senator Cook: I want to thank you, Ms. Dodds, for raising the issue on mental health. My first challenge when I came here was Senator Kirby, and the latest one is sitting at the front of the table. They have challenged me to do things that I never dreamt of doing, but when I look at the outcome of Out of the Shadows at Last, we made a difference in the lives of Canadians, and it was wonderful.
As for Dr. Keon, it took me a while to figure out what the man was about and what his aims and objectives were. With patience from him — and nights of not sleeping for me — I think I have forged an idea of where we want to go in this country. I do not care if you call it CIHI, or whatever; I do not care if you are called the leader or the coordinator — I do not care what you are called. I asked a question. We put out a model for mental health, we created a commissioner and we created a round table, a commission, from the people whom we needed at that table to drive the idea so that it would become reality. Can we not look at the same kind of thing here and get on with it? There is so much wisdom here; surely, we can find a table small enough — not big enough, because too many of us will talk too much — and get on with it? I do not care who pulls it together, as long as all the elements that we need are there and that you are flexible in your thinking and that you go for the greater good.
Thank you, Mr. Chair; that is my rant.
Mr. Wolfson: I do not want to end on too mundane a note but, first on the vital statistics, we had about $100,000 a year to do the geocoding on that for a while but the money went away. We have been generously funded for the health surveys. Regarding vital statistics, the budget is the same as it was 20 years ago. The other thing on vital statistics and timeliness, the last time I looked, the agreement we had with Quebec was signed by Maurice Duplessis in 1948. We are using microfilms. We have been trying to move to real-time electronic stuff but it has been held up with other stuff with Passport Canada, and so on. We have the technology and we are ready to roll, as are some of the provinces. However, money is involved if we want to go there.
Finally, on a less mundane note, on the Community Accounts, I want us to bear in mind that it is a framework. When you say, ``Mr. Hollett, let us get rolling to do average income,'' the data is half on the shelf if we want to do smoking. You cannot do it at the small area level. If you want to do the number of heart attacks, you can do that. If you want to do the per cent of survival, you can only do that if you link the heart attack event to the vital record, and we cannot get it on a timely basis to do that. If we want to go even further and say, ``I want to know how my community is doing in terms of revascularization, heart attacks and survival,'' we will not get there without the EHR. What you can put into that Community Account framework will depend on the information system. It is part of the story.
The Chair: Thank you so much, everyone. God bless you all. Everyone has been a great contributor. I think we are close to knowing what we want to write.
(The committee adjourned.)