HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, December 7, 1999

• 0905

[English]

The Chair (Mr. Lynn Myers (Waterloo—Wellington, Lib.)): Ladies and gentlemen, we'll call to order this meeting of the health committee.

As you know, we're dealing with Bill C-13, which deals with the Canadian Institutes of Health Research. We have a number of witnesses between nine o'clock and eleven o'clock, and from what I see, they're all here today.

We'll hear from each of you in turn, at which point we hope a few more members will have joined us. We'll have questions and answers at that time.

We'll begin with Dr. Peter Glynn, chair of the external relations committee for the Heart and Stroke Foundation. Dr. Glynn, perhaps you can lead off with an opening statement and any other comments you deem appropriate.

[Translation]

Dr. Peter A.R. Glynn (Chair, External Relations Committee, Heart and Stroke Foundation of Canada): My name is Peter Glynn and I'm a member of the Board of Directors of the Heart and Stroke Foundation and the Chair of the External Relations Committee.

I'm here today to speak to you on behalf of the foundation and of our partners, namely the Canadian Cardiovascular Society and the Canadian Stroke Foundation.

[English]

Our voluntary chair, Allan Lefever, who comes from Edmonton, sends his regrets, Mr. Chairman, that he can't be here today to give this brief in person.

We commend the federal government for the major investment in health included in last year's budget, specifically the investment in the Canadian Institutes of Health Research. Our basic message is that consultation with the health charities and professional association sectors is crucial during the Bill C-13 deliberation and implementation process.

This is especially warranted in light of the commitment by Minister Rock during second reading debate. Therein, he indicated there will be a greater opportunity for the voluntary sector and community groups to have a say in setting priorities for research and for partnerships with institutes where there are common goals to be pursued.

We would like to share our thoughts in connection with this legislation. Specifically, I would like to speak briefly to four issues—the nature of cardiovascular disease in Canada; the need for quick passage of Bill C-13; the need for representation of the voluntary sector and the lay public; and the importance of partnerships as a means of supporting synergies.

The Heart and Stroke Foundation of Canada is one of the largest charitable organizations in Canada, representing ten provincial foundations. We are proud to be the premier cardiovascular funding agency in Canada. The millions of Canadians who have donated to the foundation do so because they trust us to put their dollars to the best use possible and because they have faith in the high calibre of research that we support.

We believe the CIHR needs to take into account the foundation's great track record of success. The foundation funds more than 60% of all the peer-reviewed heart and stroke research in Canada, the largest single source of funds for research and heart disease and stroke in this country.

Last year over $50 million went to heart and stroke research across Canada, which is twice the overall support provided by the Medical Research Council. Over the past 43 years, that has added up to more than $550 million raised from Canadians voluntarily.

The Canadian Cardiovascular Society is a non-profit professional medical society that brings together cardiovascular specialists to enhance communication; to facilitate training, education and research; to establish clinical and training best practices; and to represent the profession to the public, governments, and other health organizations.

Heart disease and stroke represent the leading cause of death in Canada, accounting for 36% of all deaths in the country. Furthermore, a growing number of Canadians are living in a state of disability as a result of heart disease, especially the epidemic of congestive heart failure.

• 0910

As the population becomes older on average, an increase in cardiovascular disease and the disability it engenders will invariably follow. By 2041, almost one in four Canadians will be over the age of 65. These statistics are an ominous sign of things to come.

There are significant costs associated with these trends. For example, we estimate that for the most recent year in which data was available, cardiovascular disease was responsible for almost $20 billion in direct and indirect costs.

These alarming statistics are discussed at length in the recent report entitled The Changing Face of Heart Disease and Stroke in Canada, a collaborative effort between the foundation, the Canadian Stroke Society, the Canadian Institute for Health Information, Health Canada's Laboratory Centre for Disease Control, and Statistics Canada. We have provided members with a copy of the book.

For these reasons, we believe the changing face of disease in Canada and the increasing burden of chronic disease must figure prominently when considering the design of all institutes. It's against this backdrop that we believe it is important to highlight the historical government underfunding of cardiovascular-related research in Canada. Investments in this field are very low relative to the burden of illness cardiovascular disease imposes upon Canadians vis-à-vis other diseases.

Equity must be introduced into the way in which cardiovascular disease is funded from a federal perspective. Specifically, funding should be more reflective of the relative burden of illness imposed by the disease.

For example, it is estimated that Health Canada allocates only about $3 million out of its multi-million-dollar discretionary budget toward Canada's leading cause of premature death and disability. The Medical Research Council allocates less than 10% of its budget to a disease that accounts for more than 36% of annual deaths in Canada. This is substantially less than the proportionate investment the United States makes in its national Heart, Lung, and Blood Institute.

Clearly, our investment in cardiovascular disease is very modest by any standard. It is especially modest when one takes into consideration the growing number of Canadians who are living in a state of disability as a result of heart disease, especially congestive heart failure. The CIHR provides an opportunity to rectify this imbalance and to substantially increase the federal investment in Canada's number one killer.

For these reasons, we strongly support Bill C-13. The Heart and Stroke Foundation of Canada, the Canadian Cardiovascular Society, and the Canadian Stroke Society support the expeditious passage of this important piece of legislation. There's no question that Canada needs a massive infusion of resources—now—into our health research enterprise. This is true in terms of both the health of Canadians and the international research imperatives of globalization. We need to act now to attract and retain good young scientists. This underscores the need for speedy passage of this bill.

In keeping with the CIHR development process to date, it's important that the voluntary health sector continue to be involved in an ongoing and meaningful manner. The Heart and Stroke Foundation is proud to have been involved in this process via my membership on the original task force and my current membership on the interim governing council. Once the work of this committee is complete, the implementation phase of the CIHR enterprise will be upon us. Crucial aspects of this phase include the selection of the governing council and the nomination of institute advisory boards.

The cardiovascular community believes it is essential to have significant volunteer input and representation on the governing council, the institute advisory boards, and the merit review process. We believe the appointment of outstanding members of the community to these entities is crucial to ensure inclusivity, accountability, and transparency.

To this end, paragraph 4(l) of the legislation states that the CIHR objectives will in part be accomplished by:

(l) ensuring transparency and accountability to Canadians for the investment of the Government of Canada in health research.

• 0915

Accountability on issues means that more attention must be paid to making research more meaningful to taxpayers and to donors. Accordingly, it is necessary to have meaningful input from all research stakeholders, including the lay public. We understand this is what legislators meant in subclause 7(4), where reference is made to the appointment of

...women and men who are able to contribute to the achievement of the objective of the CIHR in the overall interest of Canadians.

In this respect, we support the brief submitted to this committee by the National Voluntary Organizations Working in Health, from which you will hear in a few minutes, in its call for increased lay representation.

Mr. Chair, this brings me to my next point, namely the importance of partnerships as a means of establishing synergy. We believe the partnership between the foundation, the Canadian Cardiovascular Society, and the Canadian Stroke Society serves as an excellent model of how the clinical research and voluntary sectors can integrate. We trust that those making the decisions for the implementation of CIHR will take into account the substantial untapped synergies between the voluntary health sector and government.

Successful partnerships begin with a shared vision, and they endure because of a shared set of values. For example, the foundation and the Canadian Cardiovascular Society entered into a unique partnership over two years ago. An important premise of this partnership was the recognition that we had to build a better bridge between researchers that refund and the translation of that research into clinical decision-making and public health policies. In particular, the society's annual meeting is an example of how partnerships can flourish. This meeting attracts the participation of over ten cardiovascular-related associations. The resulting gathering of 2,500 to 3,000 people provides the foremost venue in Canada for researchers and clinicians to meet.

Other successful Heart and Stroke Foundation partnerships include alliances with organizations such as the Canadian Council of Cardiovascular Nurses, the Canadian Institute for Health Information, the Canadian Stroke Consortium, Statistics Canada, Laboratory Centre for Disease Control, academic research institutes, the MRC, the private sector and a host of other organizations with a stake in cardiovascular disease.

As we look forward to formulating new partnerships, we have much to learn from other countries. For example, the American model, through its Heart, Lung and Blood Institute, has already provided some of the impetus for preliminary but very positive discussions between the foundation and the Canadian Lung Association, in connection with joining forces as matters relate to institute creation under CIHR.

Clearly there is considerable intersection of research interests among Canadian heart, lung, and stroke researchers. We need to strive to enable these researchers to work more collaboratively.

[Translation]

In conclusion, Mr. Chairman, the bill now under consideration was long awaited. We applaud the federal government for its financial commitment last February to the CIHR process and we strongly support the swift passage of Bill C-13.

[English]

Thank you. I will be pleased to answer any of your questions.

[Translation]

The Chair: Thank you very much, Dr. Glynn.

[English]

We'll move on now to the Arthritis Society, and Mr. Jim Davies, please.

Mr. J.I. Davies (Consumer, The Arthritis Society): Good morning, Mr. Chair, ladies and gentlemen.

My Quebec colleague Ann Qualman and I are here. She and I are consumers with the Canadian Arthritis Society, with the Canadian Arthritis Network, and also with the Cochrane Musculoskeletal Review Group. As a consumer, Ann also organized the arthritis association in Quebec so that people could get information that was not readily available. I, for my sins, am also a member of the consumer advisory committee to the Canadian Blood Services.

I want to talk a little bit about arthritis, a little bit about Bill C-13, and also about consumers. Like our colleague, we have many of the same sentiments about having volunteers and consumers as part of the team.

Arthritis is a disease that affects over four million Canadians. It comes in more than a hundred forms, and it has eight major forms. Osteoarthritis, which I have, has three million of the four million people, and more men than women. However, some of the other arthritis diseases, such as lupus, fibromyalgia, and rheumatoid arthritis—which my colleague Ann has—affect far more women than men. And these diseases are also systemic, so it's not just arthritis you're fighting, you're fighting another disease as well. Native women in particular are very susceptible to arthritis.

• 0920

There are 38,000 hip and knee replacements done every year because of arthritis. That's 105 every day, 365 days a year.

Arthritis unhappily causes the death of between 1,800 and 1,900 people every year because of the impact of the non-steroidal anti-inflammatory diseases... If they have to be strong, they have the problem of affecting the lining of one's stomach and causing ulcers. That's what people die of.

The costs of arthritis in the statistics produced in 1993 by Health Canada were second only to the cardiovascular ones, which were at some $19 billion. Arthritis was at about $18 billion, injuries were at about $14 billion, and I think cancer was between $12 billion and $13 billion. In effect, the cost of those six years ago was $157 billion for health care. Only 0.5% of the cost of health care was invested in research on diseases. Although the figures aren't out yet for what has happened this year, although there has been more research money, the cost of health care has gone up probably by $30 billion. We are still only getting from the government 0.5% invested in research.

We have Canadian arthritis centres at each of the seventeen teaching and research hospitals across Canada, with well-trained staff there. Recently we also very fortunately won a national award of excellence for the Canadian Arthritis Network. This is a competition funded each year by the Science and Research Innovation Fund. Out of seventy-odd organizations, we were one of the three winners. With that winning comes some money, $14 million spread over four years, but it is money that keeps the operations centre of arthritis going. I'll just give you a little description of what it does cover.

The Canadian Arthritis Network is a collaborative effort of over 100 basic and clinical scientists and health care providers that will offer a comprehensive and multidisciplinary approach to arthritis research from bench to bedside. This network will address the fundamental questions about arthritis disease, diagnosis and treatment. The search for new therapies and possible cures will take a quantum leap forward. Further, the network has developed strategies to deliver our discoveries and services to industry in a manner that will expedite product development and clinical trials and improve arthritis treatment sooner.

In other words, if a new prosthesis to replace a knee is brought to bear, we have thirty-odd industry organizations and others attached to this to get as quick a response as possible about whether or not it's suitable, and in order to get it into production as quickly as possible.

CAN, as we call it, reminds me of the tremendous racehorse we had in Canada quite a few years ago, called Northern Dancer. Northern Dancer was bred to run. Northern Dancer was trained to win. Northern Dancer was provided with facilities and stablehands and all the specialists that you need to get a good racehorse going. He also had an owner by the name of E.P. Taylor, a very successful businessman and horse breeder. Taylor made sure there was hay and oats for his horse so that he could run.

Our Canadian Arthritis Network is also a racer. It has been bred by the work of about a dozen highly qualified people in various disciplines who worked tirelessly to get this together. They gave up a lot of their own time, and they are high-priced people.

• 0925

So we are well bred. We have a good trainer in Denis Morrice, who's the president and CEO of the Arthritis Society. We have an excellent jockey in Dr. Tony Cruz, who is a scientist and president of CAN; and we have great staffs to look after our horse in our Canadian arthritis centres. Our owner is the people of Canada, and the agents will be, under this new bill, the governing council.

We have probably the most major race to run that any horse has run, and that is the arthritis horse against the arthritis disease horse. It's called the reduction stakes, and the reduction means the winner will get reduction in the health care costs, reductions in the pain and suffering, and a reduction in the effectiveness of this disease. The current purse is probably well over $20 billion. What we need is some money to buy the oats and the hay so our horse can run.

I'd like to turn now to the matter of Bill C-13.

The Chair: Mr. Davies, may I interject for a minute? That's really an interesting analogy; I thought that was really quite good. It's an editorial comment I'm making.

Mr. J.I. Davies: Thank you, sir. That's what happens when you lie awake in bed in the middle of the night trying to think what the hell you're going to say.

The Chair: Carry on, sir.

Mr. J.I. Davies: All right.

I'm a director of the Arthritis Society's national board, a past president of the Ontario division, and I've been out in the coalfields digging coal with all the rest of the people knocking on doors too. But this bill, Bill C-13, is the best proposal for research that I personally think we have seen. It has tremendous potential. It needs certain things to be done to maybe even make it better, and maybe I'll comment on that.

The most important thing that is implied in the bill is the recognition that the way to defeat diseases is through research. Also in the bill, not only is there going to be research for that, but there's going to be research to help improve the quality of life for all people who suffer from diseases. The bill is also universal; in other words, it carries research promises for everybody who is affected by a disease. If we don't carry that out we are going to be discriminating against some people. Maybe there are small disease groups and they'll need help. But the people who suffer even in the small disease groups need the same treatment as we who are heart or cancer, arthritis or anything else. The diseases don't care who carries their particular problems.

The bill has to be adequately funded, well planned, and well controlled. The governing council and advisory body membership selection must include people from governments, people from the health organizations like the medical and the scientific associations, and also, as Dr. Glynn mentioned earlier, from the consumers, from the disease groups themselves. These people must be dedicated. They must be willing to accept responsibility, and they must have a very broad approach to what they're going to do.

The last thing I want to talk about is briefly on consumers. No, let me get on with the proposal we now have for the CIHR organization on a combined approach to using these facilities, and this is through connective tissues. In each of us there are connective tissues and these tissues may be susceptible to other things, but certainly we are concerned that they would carry arthritis. They carry osteoporosis from the musculoskeletal side of the house. They affect skin, the skin diseases, and also oral or dental diseases. So we are putting together—I don't know what it will be called—probably a bone and joint, or something like that, proposal into the CIHR shortly to cover these diseases.

• 0930

On consumers, the breadth of partnerships envisioned for CIHR partners can be considerably value-added by helping to ensure that CIHR outcomes are practical and respond to the diverse and changing health needs. Consumers in particular can provide a reality check through their input into health needs, the social and cultural dimensions of health, prevention, and wellness strategies, as well as in ethical and other issues.

Partners should participate in decisions affecting them. This means involving them directly in a wide range of issues, establishing the research priorities of individual institutes and of CIHR as a whole and identifying expected outcomes, monitoring review of research proposals and implementations and outcomes and disseminating research results.

I don't know if I have time, but I can give you one example of being a member of the Blood Services' Consumer Advisory Committee. I was asked to join with other members from another five or six health agencies at the time when the Krever report was being held up for legal reasons and the then Minister of Health and the president and executive director of the Hemophilia Society got together and said we have to move, and the hemophilia people said we have to ensure that there's blood, pure blood. So this group got together and we worked and did these things.

We also became not part of, but were included in, the decisions made by the transition bureau, and these decisions were made not because of arthritis or AIDS, or whatever the member said, but on a broader look at life as to what this would mean.

One thing we also did in the putting together of the Canadian Blood Services was insist that two members of the 12 board members would be consumers, and they are. We are still an active independent group, and we are an accredited committee to the Blood Services and report directly to the CEO.

So that, sir, and ladies and gentlemen, is the end of my presentation.

The Chair: Thank you very much, Mr. Davies, for those comments. We appreciate them. I'm sure that later on there will be some more questions directed to you.

Let's move on to the National Voluntary Organizations Working in Health. We have with us today Penelope Marrett, who is director of health issues. Ms. Marrett, if you would, please.

[Translation]

Ms. Penelope Marrett (Director, Health Issues, National Voluntary Organizations Working in Health): Good morning.

Ladies and gentlemen, members of the Committee,

[English]

thank you for the opportunity to appear before you today to discuss Bill C-13, the Canadian Institutes of Health Research Act.

[Translation]

I'm speaking today on behalf of national voluntary organizations working in health.

First off, national voluntary organizations working in health fully endorse the proposed legislation for the establishment of the Canadian Institutes of Health Research that was introduced on November 4.

[English]

This bill provides a mechanism and structure that will revitalize health research in Canada today and into the future. We are very excited about its implementation and wish to commend the government for responding to our 1998 recommendation that urged the federal government to invest up to $500 million annually in health research.

[Translation]

As you know, health has been recognized as one of the foremost issues on the minds of the people of Canada. For several years now, poll after poll support the view that health is the number one priority of Canadians. Nearly 80 per cent of the population believes that Canada has the best health care system in the world. A 1998 poll indicated that the Canadian health system is the single most important characteristic distinguishing us from other countries.

National voluntary organizations working in health include registered health charities, with approximately 300 at the national level. These organizations act as a key bridge at the national level between research and its application through knowledge transfer of information to researchers, health care professionals and the general public. A recent Statistics Canada report estimated that $300 million was allocated in 1998 to health research.

• 0935

[English]

Research also represents hope for millions of Canadians. These Canadians have a stake in the CIHR because investments in health research are a promise of better health for themselves, their families, and their communities. At the heart of it all, the voluntary sector is an expression of this keen desire for the betterment of the health of the people of Canada. And in this way we hope the voluntary sector will be an important partner in the success of the CIHR.

At the 1999 annual meeting of the Canadian Medical Association, the Minister of Health noted that better health is an objective we all share. We too share this objective. This objective can only be achieved, however, if all aspects of the continuum of care, of health, including health research, are active and responsive to the needs of the people of Canada. The CIHR presents us with an opportunity to ensure that health research conducted in Canada continues to be strong and continues to provide leadership at an international level.

I do want to make a couple of comments about some of the concerns that have been expressed during these last few weeks. The legislation provides for the Governor in Council to make the appointments to the CIHR governing council. As you know, the National Voluntary Organizations Working in Health has been very active in the CIHR through representation on the CIHR task force, leading up the federal government's commitment in the 1999 budget, to representation on the interim governing council and responding to the various working papers that have been developed by the CIHR subcommittees.

We will continue to be actively involved in the CIHR process and are developing a list of potential nominees for the federal government to consider for the governing council. We believe the government understands that for the CIHR to truly succeed as a transformative enterprise it will be important to ensure that this objective is seen through the appointments to the governing council. As a group, we believe that any nominees we submit to the federal government will be given serious consideration.

As a sector, we see that accountability for the CIHR will work in a number of different ways. We believe that the government will be accountable for the funds it spends on health research through the CIHR to Parliament. This mechanism will help to maintain good stewardship. We see other accountabilities, however. We believe that the CIHR will be accountable to health research stakeholders, including National Voluntary Organizations Working in Health, through the appointments on the institute boards, through the partnerships that are developed by the CIHR, as well as through other accountability mechanisms developed and implemented to recognize the need for their stakeholders to have meaningful and ongoing input.

[Translation]

Our recommendation focusses on the implementation of the legislation. National voluntary organizations working in health recommend that all research stakeholders, including "lay people", be actively involved in the Canadian Institutes of Health Research process in an ongoing and meaningful way to maximize accountability to research stakeholders, donors, funders, and the people the sector serves.

Voluntary organizations working in health play a critical role in Canada's health system. Because our work enables us to reach a number of different segments of society including those afflicted with a disease or disorder, those living with someone who is ill, and those working to improve the overall health of Canadians, we wish to ensure sustained participation in the CIHR.

We applaud the government for playing its part and encourage it to act on the recommendations in this brief to ensure the continuance of a healthy and viable contribution from the sector.

[English]

Thank you. I'd be pleased to respond to any questions.

[Translation]

Thank you.

The Chair: Thank you very much, Ms. Marrett.

[English]

I appreciate your comments. There will be questions in a moment or two.

We'll move on now to the National Cancer Institute of Canada, Dr. Jim Till. Dr. Till, please.

[Translation]

Dr. Jim Till (President and Member, National Cancer Institute of Canada): Thank you very much.

• 0940

[English]

I'm here wearing three hats: first, I'm the volunteer president of the National Cancer Institute of Canada; second, I'm a volunteer member of the national board of the Canadian Cancer Society; and third, I'm here representing researchers.

If I may be a little immodest for a moment, I suspect I'm one of the few researchers in Canada who's actually done and published research in each of the four crosscutting thematic areas that will be supported by CIHR.

Wearing all of these hats, I'm pleased to add support to this legislation. Indeed we applaud the government for this exciting initiative. We believe it will improve the health of Canadians as research programs evolve in future years.

The creation of the Canadian Institutes of Health Research is a very novel and complex research undertaking. New ways of working together and translating research into action will require the most creative minds in Canada. Only through a team effort will we achieve the ambitious goals of the CIHR.

Thus, in this context, it's essential that the best people be recruited as leaders when the CIHR is created. In particular the first president of the CIHR must have unquestioned credibility and support, particularly from the broad scientific community encompassed by the CIHR, but of course from all other stakeholders involved in this enterprise. In addition, it will be equally essential to appoint outstanding creative people to the governing council of CIHR and to ensure the council has an important role in setting the broad strategic directions and policies of the CIHR.

Let me also comment on some experiences of the National Cancer Institute of Canada. My purpose is to emphasize our strong interest in forming new partnerships with the CIHR—partnerships that could greatly enhance research efforts related to cancer control in Canada.

The NCIC has been in existence for over fifty years and in many ways possesses the attributes of the proposed institutes of the CIHR. The NCIC is a separately incorporated voluntary organization that distributes research dollars raised by the Canadian Cancer Society and also research dollars raised by the Terry Fox Foundation. In 1999 the NCIC distributed approximately $50 million across all provinces in Canada to support cancer research.

The NCIC is governed by a board that sets strategic directions. An advisory committee on research oversees the grant review process, and an advisory committee on cancer control provides advice on opportunities for translating research into practice.

About 60% of NCIC funds are used to support a wide range of cancer research projects. This range includes all of the pillars, or crosscutting themes, mentioned in the CIHR mandate. In all these areas of research, the NCIC only supports the best cancer research, recommended by our scientific peer review panels.

I'd like to emphasize that an interesting feature of our scientific review is the inclusion of lay members in all review panels. In addition to providing public accountability, these lay members bring refreshing new and valuable perspectives to the scientific review process. We've had two years of experience with full implementation of this, and it's been well received by all concerned.

About 40% of the NCIC funds support targeted initiatives designed to fill specific needs for research judged to be especially relevant to cancer control. I'll give one example. The NCIC supports a clinical trials network that tests new therapies for cancer. Last year this network of sixty centres across Canada participated in forty clinical trials and enrolled over 4,000 cancer patients in its trials. A novel feature of the trials conducted by this NCIC group is that all trials have a quality of life component. The quality of life of participants is assessed as part of every study, where that is appropriate. The results of clinical studies of this kind carried out by this group have dramatically improved cancer treatment in Canada.

• 0945

Other strategic initiatives include a behavioural research centre that also serves as an expert resource for the evaluation of programs of the Canadian Cancer Society. This centre has important links to the community—that is, to community programs delivered by the Canadian Cancer Society. The centre also includes a program to support major groups of investigators all across Canada who are working together to solve major problems, and several personnel support programs that aim to build capacity in behaviourally oriented research in Canada.

In addition—and I'd like to emphasize this—the NCIC has extensive experience in partnerships with governmental agencies. For the past seven years the NCIC has administered the research funds of the Canadian Breast Cancer Research Initiative, the CBCRI. The CBCRI is a unique partnership. Two governmental agencies are involved, Health Canada and the Medical Research Council; three voluntary organizations, the NCIC, the Canadian Cancer Society, and the Canadian Breast Cancer Foundation; one corporate partner, Avon Flame Foundation; and one breast cancer survivor network, the Canadian Breast Cancer Network. These organizations, which have pooled their funds for breast cancer research, jointly govern the research initiative and set the research directions. The NCIC is responsible for overseeing the peer review process, and it provides administrative support to the CBCRI.

I'll just mention two additional partnerships that have been established in the past two years. One is a prostate cancer research partnership, which involves the Canadian Cancer Society, Health Canada, and the Canadian Prostate Cancer Network, which is a survivor organization. There's another partnership in tobacco research, which is a partnership involving the Social Sciences and Humanities Research Council and Health Canada.

The NCIC welcomes the creation of the Canadian Institutes of Health Research. The NCIC is looking forward to working with the CIHR to form novel and mutually beneficial research partnerships. We remain very optimistic about the ability of cancer research to significantly reduce the burden of cancer in Canada, and we anticipate that our partnerships with CIHR will do much to ensure that cancer patients and those at increased risk of developing cancer all receive the maximum benefit from future advances in research.

Thank you.

The Chair: Thank you very much, Dr. Till.

Those were great opening statements. Now we'll go to questions. We'll have Monsieur Ménard lead off.

[Translation]

Mr. Réal Ménard (Hochelaga—Maisonneuve, BQ): I have a few questions for the witnesses.

First of all, you all seem to have something in common, namely a desire to see consumers and "lay persons" formally involved in the establishment of the Canadian Institutes of Health Research process. If I understand correctly, the bill provides that the CIHR will serve as the link with the community.

I'd like to know what kind of contribution you see yourself making within the advisory board framework. Would you like the committee to amend the bill to include official delegation mechanisms? For example, national organizations like yours could submit lists of names to these boards for consideration in the appointment process. Would you like to see the bill make some provision for a formal process? That's my first question.

For my second question, as you know, the interim governing council, which is slated to become a permanent body, will have clear responsibility for establishing some fifteen different institutes. Increasingly, the reference is to research families. Would you like to see a separate institute established to oversee research in each of your respective fields? On the AIDS issue, some people feel that what is needed is not an AIDS institute as such, but rather an immunology research institute. Could research into cancer, arthritis and heart disease all be done by one institute? What specific groupings would you prefer to see or which disciplines do you think could possibly be grouped together?

I'll start with these two questions. I may have more later.

[English]

The Chair: Thank you very much.

Dr. Till, do you want to lead off?

Dr. Jim Till: Yes, I'll try.

• 0950

In terms of formal mechanisms of consumer representation, I would not argue for any amendments. I believe there's already sufficient will to involve consumer representatives. Too detailed a prescription of formal mechanisms might go beyond the enabling role of the legislation, but I of course would be an advocate for consumer involvement in all levels of decision-making: the governing council, the level of the advisory boards for the institutes, and at the level of peer review.

In relation to the other question, as I heard it, it was, what would be appropriate groupings of institutes? Because there is already a National Cancer Institute of Canada, which already has a number of partnerships functioning, it's perhaps less crucial for us, from the cancer perspective, exactly what groupings are the basis for institutes. It seems likely that no matter what the institute structure, most or all will be involved in some way in cancer research because of the very broad nature of cancer research.

We would look forward to working in partnership with whatever groupings are decided upon to form institutes.

The Chair: Thank you very much.

Dr. Glynn, please.

Dr. Peter Glynn: Just to reinforce Dr. Till's comments, in terms of whether we are seeking any amendments, the answer is no. What the committee might wish to do is to reinforce in the report to the government the issue of the voluntary sector, lay participation, etc., but we believe there is sufficient in the act as it currently is tabled to allow for that. The implementation is the thing we want to stress.

On the issue of the naming of the institutes, this is not an easy question. There should be only 10 to 15, which has been the intention all along. There are obviously many points of view on dividing up that structure. Heart and Stroke's perspective is that the names, the fields, need to resonate with Canadians so that they understand them. There needs to be some relationship to disease burden in the country and to the health issues. And, indeed, as I mentioned, we are working with the lung association and possibly others to bring together some meeting of minds around the possible institute or institutes.

Penny may also want to comment on the process that the health organizations are going through together.

The Chair: Thank you very much.

Ms. Marrett, please.

Ms. Penelope Marrett: I'd just like to make a couple of comments. The first would be that we have seen in the past that the representation from the lay public has been involved in the interim governing council. Dr. Glynn is one of the individuals who's on it. So is Dorothy Lamont, the CEO of the Canadian Cancer Society. That has been very important.

Also, there has been active participation by lay people within the whole process of the CIHR up to this point, and we don't expect that to change. We will be advocating to ensure that it doesn't change. We, as a coalition, have developed a number of papers that talk about the need for involvement of the lay public in all aspects, at all decision-making levels, and we expect that to continue.

As it relates to the naming of institutes, we are planning a meeting towards the middle of December, when we're going to be bringing together a number of organizations that are working in health to talk about and to respond to the request from the interim governing council about what would be the 10 or 15 institutes we would name. Although we may not come to a consensus on that, we believe we will be able to come to a consensus on developing the broad principles of what should be included when looking at naming institutes.

[Translation]

Mr. Réal Ménard: May I ask one last question?

Essentially, these institutes have a three-tiered structure. First, there's the governing council which may delegate its powers. The newly established institutes will be by-products of the governing council. The latter approves the strategic plan and each year, it approves the budget as well.

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The institutes themselves are run by a kind of internal board of directors, by scientific directors and by community advisory boards.

If I understood you correctly, Dr. Till, you would like to see volunteers serve on the scientific panels which review research projects and the development of strategic directions. In some instances, you would even like to see lay persons involved in this process. That's an interesting idea, one that I think the committee should pursue.

Each separate institute will focus on four themes: basic research, clinical research, health determinants and influences on health systems. Each institute will undertake interdisciplinary health research.

I can appreciate that you want a number of lay persons to be involved in order to maintain a balance on the scientific review panel. For example, with respect to cancer, how might the behavioural research centre you spoke of be integrated into the study of health determinants? What kind of interaction do you foresee, particularly given the current study of the behaviour of cigarette manufacturers? What exactly could we accomplish working within the framework of this institute? What connection could be drawn between health determinants and the expertise within your research centre?

[English]

The Chair: Thank you very much, Monsieur Ménard.

Dr. Till.

Dr. Jim Till: In relation to the peer review scientific review level, I'm assuming that the recommendation of the subcommittee on peer review—that there be a strong central peer review mechanism—will be supported and that there will not be multiple peer review systems, such as one for each institute. That central arrangement obviously makes it a little more difficult in terms of choosing appropriate consumer representation, because consumers would need to have a broad perspective.

I believe that is quite feasible, and I believe that in the peer review subcommittee of the interim governing council there was some debate about whether “peer review” is an appropriate name any more. Well, I believe it is, because I believe, for example, in the cancer field, that survivors bring special expertise based on their experience as survivors with a major life-threatening disease; they bring a particular expertise that can inform the review of research proposals.

Also, I believe there is a need in peer review to have such generalists. Obviously they'd need to be wise and well-informed individuals and not narrow in their perspective, but I believe they can bring much to peer review and could contribute to a centralized process.

In relation to the four research themes, striking a balance there will obviously be crucial to the functioning of the CIHR as it's planned. If we take the cancer-related example of tobacco control, of course it's not unique to cancer. There are other cardiovascular problems and respiratory problems associated with misuse of tobacco.

I would see many opportunities for partnership and, in particular, opportunities for increased involvement of partners with the existing tobacco research initiative that the National Cancer Institute of Canada has recently initiated in collaboration with the Social Sciences and Humanities Research Council and Health Canada. Additional partners, particularly partners from interested stakeholders in CIHR, I think, would add a great deal of momentum to that kind of research initiative.

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The Chair: Thank you very much.

Dr. Glynn, if I might just interject very quickly, in your submission you spoke of merit review. I wondered how you used that term vis-à-vis what we're talking about here in terms of peer review.

Dr. Peter Glynn: I think Dr. Till mentioned that there's a problem with the words “peer review”, because they tend to indicate that it's one's peers who are evaluating. I think it's an excellent point.

Actually, I was just thinking that Mr. Davies would be superb at being a representative of the public on any number of merit review committees. His involvement with blood and his involvement with arthritis are good examples. I really don't see it as necessary that the layperson be a survivor of that particular disease under investigation, but they can bring the point of view of a member who is not entangled in the science, so to speak, and who has an independent point of view about involving human subjects, about what this means to the patients, the relative importance, etc.

The scientific community likes the term “peer review”. It feels very strongly that this promotes excellence. I don't think it's worth debating the words, but the emphasis really is on merit and on involving more than just scientists in evaluating the “merit.”

The Chair: Thank you very much for that clarification.

We'll now move to Ms. Qualman.

Ms. Ann Qualman (Volunteer, The Arthritis Society): Yes, Mr. Chairman, I'm accompanying Mr. Davies for this presentation.

Certainly the two issues raised are obviously two of the really thorny issues. In terms of the involvement of consumers, I pretty much agree with the points that have been made—for example, that individuals not necessarily be chosen because they are survivors of a particular disease. On the contrary, one is looking for consumers who have a broad perspective and perhaps experience with multiple diseases.

A point that has not been raised, though, and that maybe should be considered, is that these consumers might bring a diverse type of experience with disease. For example, there should be some sort of way of ensuring your perspective of people who live with very severe disabilities or people who, for example, have a chronic disease but are very well able to function in a workplace. Caregivers are other people who bring a very important perspective to the consumer issue.

I would agree that the legislation as it now is could perhaps be made a bit more precise in ensuring that there would be, for example, a consumer advisory board for each institute and that there would be specific consumer representation on the governing council.

I'm also concerned about how consumers will be involved in other types of processes. The issue of peer review has been mentioned. I think consumers have a very useful role to play within the general planning and decision-making of each institute, in monitoring the programs of each institute, and, on this issue, in ethical issues which will be coming up with each issue.

I would expect that there would be consumer involvement at each institute and not just at the governing council level. The consumer issue is a very critical one because it's going to be a difficult one to work out. There's certainly a role for consumers as representative of disease groups. On the other hand, there's certainly a role for consumers that precisely and particularly are not representatives of disease groups. I think disease groups need to be represented because they are important partners, just as industry needs to be represented, but I think consumers have a role in themselves that's quite separate from their participation in a disease group.

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On the grouping of diseases, I realize that's another very difficult question that will have to be decided. Speaking as someone with arthritis, it struck us—and I believe we mention it in our two-page brief—that under the MRC there was no arthritis panel, despite the enormous number of Canadians for whom arthritis is a very important issue.

We believe arthritis, for example, should definitely be grouped with other areas. The current parlance is to talk of bone and joint. The United Nations has just declared the coming decade as the bone and joint decade. Arthritis would well fit in with osteoporosis, dental, and various other groups within this bone and joint rubric, so that's one possibility.

We are concerned, having gone through the experience of being on the sidelines—Jim feels very strongly about it—that no group should really be excluded. Somehow, in the grouping, there must be constant vigilance to ensure that as new health issues come up or the importance of others becomes clear, they somehow fit within it. This is a universal program, and whether they fit within heart and stroke, bone and joint, or whether there are some cross-cutting institutes on immune issues or genetics or what have you, somehow they also have to be included.

The Chair: Thank you very much, Ms. Qualman. We appreciate those comments.

Mr. Jackson, if you would, please.

Mr. Ovid L. Jackson (Bruce—Grey, Lib.): Thank you very much, Mr. Chairman.

I want to thank our guests for being here today. I want to pursue the line of questioning that has to do with peer review inclusion, I guess, and public education.

Most scientists seem to want to go the peer review route because that's something they're comfortable with. They think that people from within their academic field come together and have their best interests at heart. But then we have this disconnect where the general public, particularly in this day of the information era, can get on the Internet and get all kinds of information.

Sometimes there's a lag in time where maybe a drug is approved in another country and people are dying. They say “Give me the drug right now”. Then the scientists feel under the gun, and of course we get caught in the middle. If we approve the drug, all of a sudden we're liable if the drug hasn't gone through the correct trial, and the bug may mutate and get worse rather than better. But you say “Hey, I'm the one who's dying. Give me the damn thing and maybe I'll survive.”

I have a question for all of you. You seem to have been comfortable with the MRC. It seemed to work and you've all grown different tentacles. But because we have new objectives and are looking toward how we're going to serve Canadians better, I have maybe two questions.

First, because the fields are so diverse and yet inter-related, how are you doing in terms of getting it together and having a clearinghouse, so they don't have to go to a gazillion different places for information in regard to the relevances—whether or not some of them cross over into the other one? I think I've heard that before.

In disseminating information to the general public, there's some media education required. Who's going to do that? How does your organization get information to the general public?

Ms. Ann Qualman: I'd be glad to speak to both points.

In terms of a clearinghouse type function, Mr. Davis mentioned the Cochrane collaboration. I don't know if you're familiar with that, but it is an organization that does reviews to determine the best evidence. It does reviews of all the research, published and non-published, on a particular issue, to determine what the findings are.

Jim and I happen to be members of the consumer group for the Cochrane collaboration, with regard to musculoskeletal, which is a long word for arthritis, back and other areas. We have been involved—and Mr. Davies in particular—in doing one-page summaries of the review findings that are specifically for consumers.

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On the next step, the Arthritis Society has an extraordinarily successful web page. When the screen opens up, one of the key things there is the Cochrane collaboration. If you press that button, it'll take you right to consumer summaries. You can look at them and read them. Obviously, some people don't have access to computers and this is not going to reach everybody. But I think they're getting over 30,000 hits a day on the arthritis web page.

That is the way to go. Other health groups could do something similar, to try to get these kinds of research findings out there and make sure they're summarized. Maybe a function of the CIHR and the consumer panel advisory groups will have to be to help ensure there are consumer summaries of the work done by the various institutes, and then to help ensure that those summaries get distributed.

Mr. Ovid Jackson: On a related question to that, information is everywhere, and sometimes it pops up, whether they're using herbs or what have you. In the good old days, you knew the book. It was written by Dr. X or Mrs. Y and you had Coles notes or somebody who knew about it. Now all of a sudden it's on the Internet and there's really no way of tracing whether the information is good or bad or where it's coming from.

Somebody who has a problem and is dying reads about it and says “Hey, this is something new I should be trying”. How does this work? Do you have little groups that work with that information? Because of the era we're living in, that's going to happen on a daily basis.

Ms. Ann Qualman: If I can just clarify, that's the whole point of the Cochrane approach. It's an international organization operated by volunteers—researchers, doctors and other volunteers. They want to be seen as the Canadian standards association. They want to become a recognized standard to precisely look at the quality of the research done on herbal treatments, or what have you. Very often the finding is that the studies were not well carried out and we don't know what the effects are. Even that is still valuable information, and it points to areas where greater research is needed.

What I like about having consumers involved, especially with the CIHR, is that it will help to ensure that research is done on precisely those kinds of areas you're referring to, where consumers are spending billions of dollars and want to know the answers.

Mr. Ovid Jackson: So you'd use it as a feedback mechanism to maybe get some research.

Ms. Ann Qualman: Absolutely.

The Chair: Mr. Davies.

Mr. J.I. Davies: I don't think many of you know about the Cochrane collaboration and what it means. As Ann has just said, it's international. China was the last country to join. It was founded by a British doctor who all of sudden started thinking about what he was doing and the interventions all doctors were making in the health system. They weren't looking at the impact or the effect of those things on the patients. He decided they needed a way of doing clinical trials to determine whether drug A was better than drug B, or if exercise A was better than this or that.

That's the theory behind the Cochrane collaboration. The Cochrane Musculoskeletal Review Group is based here, so we're in close contact.

The Chair: Thank you very much for that clarification.

Ms. Marrett, and then Dr. Till and Dr. Glynn.

Ms. Penelope Marrett: Perhaps there are a couple of things we can talk about. I understand that one of your concerns is about how the public gets the information, particularly after the research is completed.

One of the things the federal government established was the Canadian Health Network, which is a network of information. Many voluntary sector organizations from across the country at local, regional, provincial, and national levels are involved in it. It is a system that provides information on a whole host of different areas of concerns related to health. It was just recently launched at the end of November by Minister Rock. It certainly will provide people with a vast amount of information. It will also enable us, particularly voluntary sector organizations, to act as one of the bridges, taking research and the findings from research and ensuring that the general public is able to find and get that information they are seeking.

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There was also a subcommittee of the CIHR on knowledge management, and I would turn to Dr. Glynn to speak to that issue in more detail. That subcommittee talked about the need to ensure the knowledge gained is also transferred.

The Chair: We'll hear from Dr. Glynn in a minute, but before we do, Dr. Till, please.

Dr. Jim Till: The knowledge management issue is a crucial one, not only because there's a lot more information to share, but because we're now increasingly aware that that information has to be turned into knowledge, and that knowledge has to be turned into action.

The Canadian Cancer Society uses every medium it can to provide information and knowledge to the public. The web page at www.cancer.ca provides access to a range of information. We're finding, as the Internet and the web evolve, that people are looking for credible sources of information in this vast maze that is the Internet. They are looking to governmental organizations and to senior, responsible voluntary organizations—organizations with credibility and some detachment, in the sense that they're not trying to sell something. The experience with that is very positive. Of course it requires effort and talent to manage it.

The other thing the Canadian Cancer Society has done is of course recognize that as yet, only a minority of the population have access to the Internet, so over the past three years they have launched a national cancer information service, which is available through a toll-free number anywhere in Canada. One can talk to an information specialist who has access to reliable sources of information and a friendly system that allows them to call up the appropriate information and personalize it for that individual.

So the challenge for us in the changing information age is, if I can use a food analogy, to be able to cater at the same time to those who want a snack and those who want a full banquet. That means being able to interest them with a snack and then take them as far as they wish in terms of the kind of information meal they're looking for.

The Chair: Thank you very much.

Finally, Dr. Glynn.

Dr. Peter Glynn: Thank you, Mr. Chairman.

Thank you, Mr. Jackson, for your superb question, because that really is the question: How are we going to use the knowledge that's developed?

Heart and Stroke for some years has been the authoritative voice on heart and stroke issues in the country, and we believe the public sees us that way. Indeed, just as a little vignette, Marketplace ran a story on Health Check, which is a Heart and Stroke-sponsored nutrition information program. An elderly gentleman in the store, when asked whether this checkmark would make a difference, said no. Then he looked at it more closely and saw Heart and Stroke on it and said “Yes, if it's Heart and Stroke, I'll buy it.”

So again, what all of the health charities—which isn't really the right word, and I'll come back to that in a minute—have been doing is transforming themselves from merely going door to door, as Mr. Davies said he's done and as all of us have done, to becoming the place where Canadians can come to find an unbiased source of information on particular diseases. There really is a transformation in the national health organizations around that. I'll come back to that in just a minute.

We as well are part of the Canadian Health Network, and the Heart and Stroke website will be up in about a month, again to give people access to that. But we've had paper for some time, because as people have pointed out, not everybody is connected to the Internet.

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The issue with the health organizations as well, though, is taking the knowledge of the symptoms of stroke that comes from research and making sure people are aware of that, and in a sense helping people live with diseases. We need to be very careful. Again, the broad-cutting themes of CIHR's research will speak to each aspect of diseases and conditions, not just to cure. That is important.

One of the issues on knowledge management—and there is a working paper from the interim governing council on knowledge management—is the need for this translation. I know that in your committee, one of the concerns that has been raised by some members is “We're not going to put too much money into administration, are we?” It might be useful for the committee to say some things are administration, such as the financial affairs, but the gathering together of information, such as the Cochrane collaboration does, is in my mind not administration. If I can be a little pejorative, there really is no point in doing research if you don't have any way of getting the answer to others and bringing together the separate answers and putting them together in something that's useful.

So I would really caution the committee not to be too concerned about the other things CIHR needs to do to make the research useful and to disseminate it, and one of those is the knowledge management function.

The Chair: Very good. Thank you very much.

Mr. Earle, you've been most patient.

Mr. Gordon Earle (Halifax West, NDP): Thank you very much, Mr. Chair.

I want to thank the presenters for their fine presentations. Certainly this is a very important topic.

One of the important issues when looking at research, particularly health research, is the whole question of a code of ethics and the conduct of researchers. I think Ann mentioned earlier the question of ethics.

Currently, I understand, the Medical Research Council is one of three members of what's known as the tri-council, which would include also the Natural Sciences and Engineering Research Council of Canada and the Social Sciences and Humanities Research Council of Canada. In 1998 the tri-council issued a policy statement on ethical conduct for research involving humans. I understand compliance with that policy by both individuals and institutions was to be used as a base for funding decisions.

As we know, Bill C-13 does away with the MRC, so I'm not sure exactly what that would do with this tri-council and its code of conduct. But I do also note that Bill C-13 does speak in paragraph 4(g) of “fostering the discussion of ethical issues”. That's about the only real reference in the bill to ethical issues. There's no meat put onto that.

I'm just wondering if any of the witnesses here have any comments around the concept of enshrining in legislation a code of ethics for health research and giving it legislative power. When I say that, I mean something that is perhaps separate from the CIHR governing councils, because there could be potential for a conflict of interest when you have a council that's both funding and promoting research and at the same time being charged with the responsibility of monitoring ethics. So perhaps the idea of having a separate ethics board reporting directly to the minister would be of merit in this whole picture.

I'd like some feedback from the people who've spoken on that concept as to whether they've given it any thought and whether they feel it's useful.

The Chair: That's a very good question.

We'll start with Mr. Davies, please.

Mr. J.I. Davies: My basis of concern maybe wouldn't be a concern as long as we make the right selections of the right people. We have to choose broad-minded, responsible people who will look at this in the total sense, as a start point. Otherwise we aren't going to make Bill C-13 work very well. It's just a matter of judging and knowing people and putting their names forward to be part of this.

That doesn't help you too much.

The Chair: Thank you very much.

Dr. Till, do you have anything to add?

Dr. Jim Till: It's a very positive feature of this enabling legislation that ethical issues are explicitly mentioned. In terms of a detailed code of ethics built in, again, the intent is to have enabling legislation and not to have it become restrictive. A concern is that ethics evolves, particularly now, in large part because of new knowledge coming out of research. The ethical issues that are at the fore are different from the ones that even a few years ago were at the fore. A code of ethics, I believe, has to evolve as research knowledge evolves.

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Mr. Chair, I understand that Dr. Knoppers appeared yesterday.

The Chair: Actually, Dr. Till, I was going to mention that. Dr. Bartha Knoppers was here yesterday, from the University of Montreal.

Mr. Earle, perhaps you want to pursue that. She really did give very good testimony, and perhaps we could take a moment to look at that.

Mr. Gordon Earle: I have a follow-up question, which is along similar lines. The bill talks about encouraging innovation and facilitating the commercialization of health research. I want to focus on that just a little bit, because we know the difficulties research can get into. If it's so closely tied to corporate and commercial sponsorship, it can lose its academic freedom and independence and the ability to come forth with a clear objective and accurate findings. We know that. We've seen examples of what's happened with various people when they've spoken out on issues.

Some witnesses have expressed concern about this whole process of commercialization. Do any of you who have spoken have any particular concerns about that aspect of the legislation and about the commercialization of health research?

Just before you answer that, coming back to Mr. Davies' comments about the choosing of people on the board as perhaps controlling the ethics issue, I agree it's important to get good people. On that issue, we also have some concern about the method of selection for the people on the governing council, about the fact that it's all by Governor-in-Council appointment. There may be some concern from people in the community about actually getting representation in the way they feel they should. So that's another issue that ties in with this.

The Chair: Who wants to deal with the commercialization issue first? Then we'll get into the appointment process second.

Dr. Glynn, please.

Dr. Peter Glynn: One of the issues about a knowledge-based society is that you need some knowledge. That knowledge is used in a number of ways. I think the bill makes it quite clear that first and foremost it's used to improve the health of Canadians, to increase the capacity for research and to improve the health care system.

The Heart and Stroke Foundation's view of things would be that there is nothing particularly wrong with commercialization if the other things come first. This is about the health of Canadians. This is about having services and products that do promote that and add value. That point of facilitating commercialization is at the end of a long list of objectives. It is not the first objective and it is in the context that I just mentioned.

The Chair: Mr. Davies.

Mr. J.I. Davies: It's important that if you make the industries that are involved in trying to help improve the health of people more knowledgeable, notwithstanding the fact that they're trying to make a lot of money, then hopefully they can direct their energies to get things that are going to be better for patients. In other words, you don't just select one; you have to treat them all the same way. I think this is a very useful input.

In our Canadian Arthritis Network we have 120 scientists and health professionals in part of that organization. We also have about 45 other parties, a lot of them from industry, from government, and other areas, that are all part of this team that makes it possible to get information out and get results coming back as quickly as possible. It's not a matter of sponsoring any particular one for any reason other than that.

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I think that's what bothers me. You don't want to get covered all over with a lot of sponsorships just for the sake of getting a few bucks from them. They have lots of money. They can help any of our disease groups probably to achieve better results. But it's a matter of how you take care not to get overly committed to any one particular organization.

The Chair: Thank you very much.

Finally, then, on the process of appointments, does anyone care to speak to that? Ms. Marrett, please.

Ms. Penelope Marrett: The voluntary sector looked at that issue very carefully. Many of the organizations looked at what has been transpiring over the last year as it relates to the CIHR, and they decided that in actual fact the CIHR, through the interim governing council, has already begun to implement what we see as being one of the transformative issues, which is bringing all the various research stakeholders to the decision-making table. We strongly believe the government will continue to ensure that this happens. So we are not as concerned about the fact that in the legislation it does say that the Governor in Council will be making the appointments. We know that all the nominees put forward by the research stakeholders will be seriously considered in this process. We believe the government will ensure that it continues in that way.

The Chair: That certainly has been the testimony to date on that point. Thank you very much.

Dr. Glynn, do you have something final to add?

Dr. Peter Glynn: Yes. I think this is one of the very few occasions when the government has actually asked for nominees for Governor-in-Council appointments. We view that as being very positive.

Mr. Gordon Earle: I'd like to quickly follow up on that point.

The Chair: Do it very quickly, please.

Mr. Gordon Earle: When your organizations receive a request for nominees, to ensure that the points that have been made, for example, by Mr. Davies, about the number of aboriginal people who suffer from arthritis are taken into consideration, do your organizations reach out into those communities in particular, the aboriginal communities and so forth, to get names that would be appropriate for the appointments?

The Chair: I see heads nodding, so I think the answer is apparent. Thank you.

Mr. Jackson, a very quick question, but a superb one as always.

Mr. Ovid Jackson: It wasn't a question. It was just to add to Mr. Earle's concerns.

What we have been told, and it should be made clear, is that there is a lot of private money involved in research and that the rules of engagement are extremely important. We were also told yesterday by the ethicist that it would be even better to include people from the pharmaceutical companies in the process so that they can learn and understand what they have to do. So excluding them from the process is not a good thing to do.

With regard to the appointments, everybody gets nervous, but the government really has nothing to do with these appointments. There are these nominees, and they're advertised widely, and the community seems quite satisfied with that particular process.

That's all I wanted to add.

The Chair: Thank you. That was a good addition to the comments made.

Dr. Till, I just wanted to make sure I understood fully what the National Cancer Institute did with regard to the two advisory boards. As I understand it, one is looking at research and the granting process, and the other is translating that research into practice. Is that correct?

Dr. Jim Till: That's correct.

The Chair: Is that a model we could be looking at with regard to the CIHR? Is that something you'd recommend in terms of where we could go here?

Dr. Jim Till: As I read the material from the working groups, the subcommittees, the issue of oversight of the peer review process is built into those documents, so the advisory committee on research that the NCIC uses has, I believe, a counterpart in the proposed structure for CIHR.

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What the NCIC has done that I think has been novel in comparison, for example, with the Medical Research Council—and this is a detail about peer review—is that after each competition the advisory committee on research meets with the chairs of each peer review panel and questions them very closely about their use of the rating system, the scoring system, for the grants.

Even though every peer review panel comes up with a ranked list of research proposals, their use of the scoring system may not be identical. One of the major functions of this advisory committee is to make a judgment, in the kinds of terms that are used, as to which committees are soft and which are hard, and, in terms of their use of the scale, which are strict and which are more lenient. It doesn't mean they're lenient in terms of their judgment. It just means their scores might be higher or lower. We found that process to be a very valuable one, and I would think it could be a function of the oversight committee that will be looking after peer review in the CIHR. I strongly believe there needs to be such an oversight committee, and I personally believe its functions should include that.

With regard to the Advisory Committee on Cancer Control, I would have to defer to Peter Glynn's greater knowledge of the contents of the working papers, but I'm not aware of any exact counterpart. In terms of its advice to the NCIC, that group has been evolving. It has in fact just recently held a workshop, and both of us happened to be there, in which it was re-examining its role particularly in relation to working toward a plan for a Canadian national cancer control strategy. A working group, which includes Health Canada and a number of other stakeholders, has already begun to work on that.

The involvement of a group from the voluntary sector can serve as a kind of honest broker in that kind of process, so my own hope is that kind of role will continue. Obviously the National Cancer Institute of Canada and the Canadian Cancer Society don't have the resources to do much more than their facilitative and honest broker kind of role, but I think it can be very valuable. This is where we are looking forward to some partnerships with CIHR in terms of perhaps providing that kind of facilitative, honest broker role to various partners in the CIHR that are interested in these similar goals.

The Chair: Just out of curiosity, in terms of cancer and the advisory board that translates research into practice, how successful is that? How effective is that?

Dr. Jim Till: I don't need to remind members of this committee that in Canada health services are a provincial responsibility, so there has to be a way of connecting the research that's done under federal support or national non-governmental support with those who are making decisions about the delivery of health care or health promotion programs at the provincial, regional, and local levels. I don't think we have the answer to that yet.

I see CIHR providing an entirely new way of approaching this difficult and crucial problem. I believe we in Canada have an excellent chance of leading in this area, in part because of our unique health care system, in part because of our vast experience with federal-provincial partnerships, which are not always happy but are often creative and novel, and in part because of our very vibrant charitable and non-governmental sector.

The Chair: Thank you very much.

Mrs. Qualman.

Ms. Ann Qualman: I'd like to make a brief comment on this relationship between the research and the results of that research.

In the way in which the Canadian Arthritis Network, CAN, has been set up just in the last year, the whole idea is to bring together the researchers with those parts of industries that could make applications of that research. That's what is assumed to be a type of model the institutes would be interested in.

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In response to Mr. Earle's concern about the commercialization of research, and therefore who drives the agenda, that obviously is a concern. Therefore, it's one reason that, for example within CAN, the Canadian Arthritis Network, government itself is a major player to help provide that kind of balance and that public interest to the process. I would add that the role of the consumer is also part of that.

So government and the consumer can help to deal with the concerns you're raising about who drives that agenda. But the institutes themselves should be able to bring together the researchers and the applications of that research precisely because the applications of research in Canada tend to be very, very slow.

The Chair: Thank you very much.

I think with those comments, we're going to conclude. I want to thank each and every one of you for providing very valuable insight and being part of this important process. We appreciate your time. Certainly it's been very, very helpful.

Mr. Szabo, you've reappeared, I see.

Mr. Paul Szabo (Mississauga South, Lib.): Yes. The finance committee ran into trouble, so we just adjourned quickly. Here is the finance committee report.

I did listen to all the presentations, and there was a question I would like to know the answer to, if you would permit me to table that question.

The Chair: Very quickly, because we do have other witnesses.

Mr. Paul Szabo: I understand. Is that all right?

The Chair: Yes.

Mr. Paul Szabo: Thanks.

Yesterday the committee met some brilliant young research people who had come back from abroad, from the Mayo Clinic, from the U.K., etc., and they talked about risky research versus low-risk research. They felt that a lot of people would go to the low risk, because they have a better chance of getting grants. I think this is really important, because now it raises the issue about the range of research and whether or not we should be specializing more in certain areas that would be more attractive in terms of the possibility of getting grants.

They also raised the issue that if we do everything, the MRC grants averaging $70,000, or something like that, are not even in the ball park of the kinds of things that are available abroad. I really wonder whether or not we should try to be all things to all people at all times. Maybe we have to start taking the realities of the research environment and what Canada has to offer and start focusing ourselves a little bit, and maybe decide whether or not we should be involved in low-risk research, or in those high-risk research areas where in fact the vast majority of what researchers do results in nothing.

The Chair: Okay, that's a good question.

Dr. Glynn.

Dr. Peter Glynn: One of the profound things with CIHR is it creates a more proactive structure and strategy for research, and certainly the intent is that each institute would create a strategic plan. I think, Mr. Szabo, that is exactly where those questions should be addressed—in the strategic plan for each institute. What are we going to focus on? Indeed, the working paper on institute design talks about strategic development and strategic initiatives, as well as investigator-initiated research.

The other thing is that certainly the advice from the interim governing council is that the governing council retain a pot of money to fund bright new ideas that look promising but are a little different, again, a way of making sure that there is some high-risk endeavour here, not just people going for the lowest part.

The real difference between MRC and CIHR is creating a structure to plan and provide direction, but not to direct research in this country.

The Chair: Can you add to that, Dr. Till?

Dr. Jim Till: It's difficult to measure research productivity, particularly the cost-effectiveness of research productivity. But I think it's widely accepted that Canada gets a lot of bang for the relatively small number of bucks we have been devoting to research. We have had no trouble generating outstanding young investigators with creative new ideas. The problem we've had is hanging on to them. And I believe that CIHR will be not only very important, but a crucial step in changing that pattern.

The Chair: Thank you very much.

Ms. Marrett.

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Ms. Penelope Marrett: I think your question is a very important one. As someone who is not a researcher, I think it's going to be extremely important for us to ensure that researchers who have and are following ideas that through a merit-review system or a peer-review system have been deemed to be credible should be funded. When we look at some of our Canadians who have won Nobel Prizes, many of them were not involved in low-risk research. They were involved in high-risk research that has benefited not only Canada and Canadians, but people around the world. I don't think we ever want to lose that.

The Chair: Thank you very much.

The final word goes to Mr. Davies.

Mr. J.I. Davies: The Arthritis Society has the same problems, and it's a matter of if you don't have good research, you aren't going to go very far very fast.

Mr. Chairman, the final point I would like to make... I don't envy you and your people putting together all the hearings and all the information you've gotten on a two-sheet page so everybody can have a nice quick summary. I think the thing for all of us to remember is that we are dealing with diseases affecting all people, and our energy should be going there, not to any fights for position or anything like that. For goodness' sake, focus on what we're trying to do, and I'm sure we will succeed.

The Chair: Thank you very much.

Those were good wrap-up comments, and we'll take them for what they were. Thank you very much to each and every one of you.

Before we adjourn, I want to remind the committee that tomorrow we're meeting at 3:30. Minister Alan Rock will lead off that session. At 4:15 we begin clause-by-clause deliberations with respect to Bill C-13. We'll take Thursday if we need it, in terms of wrapping that up, and we'll report to the House on Friday.

I also want to remind committee members that if you have any amendments you want in, please get them to the clerk. Amendments are, of course, appropriate either at the committee hearings or after that at report stage.

Thanks very much. We'll suspend these hearings until the eleven o'clock session.

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The Chair: Ladies and gentlemen, we're reconvening this health committee.

As you know, we're dealing with Bill C-13, which deals with the Canadian Institutes of Health Research. We started listening to witnesses at nine o'clock, concluded that panel, and now have a new panel with us.

Welcome to each and every one of you.

Before we begin with Dr. Mary Ellen Jeans, executive director of the Canadian Nurses Association, I will explain our process.

I understand some of you have distributed briefs. Most of them are in both official languages, English and French, although I think there might be one in English only.

We will first hear all of you by way of opening statements, after which we'll have questions and answers.

Having said that, I would ask you to please lead off, Dr. Jeans.

Dr. Mary Ellen Jeans (Executive Director, Canadian Nurses Association): Thank you very much, Mr. Chair.

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Ladies and gentlemen, I'm very pleased to be here this morning to represent the views of the Canadian Nurses Association. Along with many others who have presented before this committee, I share their support for the concept of an integrated, multidisciplinary approach to health research in Canada. CNA also applauds the government for the consultative process that has characterized the development of the CIHR vision.

As a nurse researcher, I recognize the tremendous value that quality research, broadly disseminated and integrated into practice, has to bring improved health to Canadians. All of us also recognize the need we have in Canada to enhance our research capacity. In the context of a competitive global environment, we must have a well-structured, well-funded, and well-integrated system for health research, a system that will attract and retain our best investigators.

The proposed Canadian Institutes of Health Research offer an innovative vision to accomplish an effective national health research infrastructure. We believe the legislation before you provides the broad enabling framework required to put such a vision in place. However, we do have some points we would like to raise within the context of the legislation and a few specific recommendations that we feel will strengthen the legislation.

I guess one of my first comments relates to the preamble of this legislation, in which there is comment about the valued contributions of the Medical Research Council and the National Health Research and Development Program. However, if you move to the back end of the legislation, where the detail for the transitional period is outlined, there is no further mention whatsoever of the National Health Research and Development Program. It's therefore not clear to me if the intent of the legislation is to incorporate NHRDP as well as MRC into CIHR.

The reason I raise it is that traditionally, nurses, population health researchers, health economics researchers, or the broad spectrum of researchers who have not traditionally been funded by MRC have been funded by NHRDP. This therefore just raised for me a concern about what was going to happen for that funding body for the development of research.

I recognize that the vision of CIHR is to embrace all health researchers, with all disciplines involved, but I think it would serve the legislation better to either not mention NHRDP in the preamble or to say somewhere that it is being rolled in.

That brings up another point on that transitional aspect of the legislation. A great deal of the text is related to the transfer of MRC to CIHR, much of it having to do with the rollover of staff and so on, which is totally fair, because I think staff also need to be reassured in the legislation about their future employment. But I'm concerned—and again it relates to the past and the history of funding, since many groups have not been included in MRC in any real way—that to really enact this vision, maybe there needs to be something in the detail to talk about the new skill sets that might be required at the operational level to actually make the vision come true. I just raise that as a technicality.

I'll return now to the reason I was supposed to be here, my speaking notes.

The Chair: Thank you very much. That was an important point.

Dr. Mary Ellen Jeans: I guess we must emphasize that the objective of CIHR as outlined must be the improved health of Canadians. The CIHR should exist to meet the needs of Canadians first and foremost, and only secondarily to meet the needs of researchers. I think we need to keep that point at the front of our minds.

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This will require that the CIHR build and maintain an appropriate balance between biomedical, clinical health services and research related to the broader psycho-social and economic determinants of health. There must also be a balance between addressing immediate needs and research that examines issues on a long-term basis.

One of the problems with Canadian funding councils is that mechanisms to support longitudinal research have been weak. To understand many things, including basic research, but also psycho-social research, requires following cohorts on subjects over long periods of time. If you want to know the impact of fetal alcohol syndrome on 25-year-olds, then you have to study those people throughout the course of their lives. That's an important point.

It has been the history of the lack of balance in the support of funding of research that has created most of the concern we have about the proposal. For example, while nurses make up 75% of health care professionals, nursing research has traditionally received less than 1% of research funding at the federal level. While the nursing community was pleased with the creation of a nursing research fund in the 1999 federal budget, I want to emphasize that this small fund was designed to address very specific types of research, and mainly human resources planning research to address the growing shortage of nurses and other health professionals.

The nursing research community looks forward to being active participants in a broader, multidisciplinary, balanced research agenda for Canada. While the legislation suggests this balanced approach, we believe a mechanism is required to really ensure this balance is achieved. In establishing the framework for CIHR, we also recommend that the peer review processes used to approve and select health research for funding should respect the full range of different research methods and interests.

We would also like to emphasize and encourage the need for broad public participation in CIHR. If we come back to the premise that CIHR is in the interests of the health of Canadians, I think public participation is an important aspect that is missing in the legislation in any specific way. The Canadian public and members of stakeholder groups outside of the research community can make valuable contributions to the creation and design of research agendas. The public should be involved in the processes and the governance of CIHR, including participation on the proposed advisory boards for the institutes and for the governing council. We would therefore make a recommendation that representation of the public be sought.

This legislation has to be truly transformational. We see a vision, and we know that vision is transformational. We have to make sure we get the legislation right so that the transformation takes place.

To ensure that this legislation continues to reflect the expectations of you people, the legislators, as well as the community involved, the issue of accountability needs to be more fully addressed in the legislation.

We believe the criteria for the selection for the proposed institutes, for their evaluation and monitoring, should be articulated in the legislation. We'd encourage the addition of a parliamentary review process to ensure true accountability to Canadians. We recommend that it take place every five years.

In conclusion, the nurses of Canada welcome this initiative. We believe it truly offers an opportunity to improve the health of Canadians and our health care system, and to really transform our approach to health research in Canada. The legislation that you pass will mark a truly historic turning point in Canadian health research. We urge you to ensure that it is balanced, accountable, and in the public interest.

Thank you.

The Chair: Thank you very much, Dr. Jeans, for those opening comments. We appreciate them.

We'll now move to Dr. John Millar, who is vice-president of the Canadian Institute for Health Information.

Dr. John Millar (Vice-President, Canadian Institute for Health Information): Thank you, Mr. Chairman.

Thank you very much, ladies and gentlemen, for the opportunity this morning to give the point of view of CIHI on the creation of CIHR.

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I think I'm going to be making two main points for you. Number one is that we're fully in support of the legislation. We like the vision that's espoused there, and we are strongly behind this legislation. The second is to offer for you a little bit of understanding, since CIHI is a research funding organization with potential overlap with some of the functions of CIHR, on just how we envision these things working in a coordinated and partnering way.

You have the overheads in front of you. The mandate of CIHI, which was created in 1994, is basically to coordinate the development and maintenance of the country's integrated health information system. In that role, the organization draws on research—we will be funding research—and our databases are also the source of research. So we are interdigitating with the research processes in at least three ways.

Our mandate is to provide accurate and timely information for several reasons: to support the development of sound health policy in the country; to help the managers of the health care system manage more effectively; and perhaps most importantly, to keep the public informed of what's going on, both with their overall health and with how the performance of the health care system and the other determinants of health explain the overall health patterns that we see in the country.

So the mission of the organization is to improve the health of Canadians through the provision of better health information. Our main product to do this and get this information to the public, to managers, to policy-makers, and to governors is through reports that will be answering basically two big questions. That is, how healthy are Canadians, and how well is the health care system functioning?

This will be done through the so-called road map initiative that the government, in its wisdom, allocated $95 million to in the last budget. This process collaborated with a number of organizations, including the federal Minister of Health's advisory council on health infrastructure, Statistics Canada, and over 500 people across the country, to come up with the contents of this road map and fulfil the health information needs of the country.

The vision of this is to provide an action plan to strengthen the health information system, and the overall goals are to provide better information to allow interjurisdictional comparisons. That means not just at the international or the interprovincial levels, but providing data on a comparable basis right down to a regional health authority level right across the country. We are already generating those data and making them available. They're getting into the hands of regional health authorities across the country, and those data roll up to allow provincial, national, and international comparisons.

I want to jump now to this particular diagram that gives you a quick overview of how CIHI in some ways will be interdigitating with CIHR.

At the top of this dot, the international symbol for information, is health information that will be in the form of reports, as I say, to the public, which we will generate in partnership with Statistics Canada. But we will also make those data available to the media. This will come out in the form some of you may be familiar with through the Maclean's magazine health reports, and so forth. So there'll be a number of ways in which these data will be turned into information and brought to the public, the managers, and the policy-makers.

The next important rung here at the top of the bar is research and analysis. Of the $95 million that was allocated for the road map, $20 million is going into something called the Canadian Population Health Initiative. That Canadian Population Health Initiative will be funding population health research. It has a council that's in the process of being appointed, and those cashflows will start to get going in the new year. Now, that is a potential overlap with the CIHR population health institute, if one gets formed there. I will go into that a little bit to outline for you how we see those things being coordinated.

Then there are a series of other things, including the development of health indicators. There are enhanced data holdings. CIHI is the custodian of 14 databases, including the national health expenditures, numbers of physicians and nurses available, volumes and services provided, and many other data holdings that are a very potentially rich source of research studies that CIHR researchers may draw on.

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The Canadian Population Health Initiative, as I've mentioned already, was developed as a recommendation out of the Prime Minister's national forum on health. It is charged with the development and maintenance of population health indicators; the production of reports on health status—which I've already referred to; the further enhancement of databases; the generation of new knowledge through research on the non-medical determinants of health; and contribution to the development of a national population health information system and infrastructure. The key functions are to contribute to the development of reports and to support the development of policy options as to how population health can be improved in the country.

Now, if you look at this page, I think it shows you in quick outline how the functions of CIHR and the CPHI under CIHI relate to one another.

Under the proposed legislation, CIHR has five main themes: the health of populations; societal, cultural, and environmental influences on health; health systems services; clinical research; and biomedical research. Those five themes are captured on the left-hand side of those columns. On the right-hand side you see the five corresponding functions within CIHI that offer the potential for partnerships, interaction, and coordination between the two organizations.

So, on the health of populations, under CPHI we have the reports-to-the-public function and the development of population health indicators. Under societal, cultural, and environmental influences, again, we have the reports and indicators function. Under health systems and services we have not only the reports and indicators, but we have a wealth of databases that may, in fact, be the basis of research out of CIHR. Under clinical research, we have a similar sort of thing where we will draw on the research findings to develop databases and reports, and the databases themselves may be the base for research.

Under biomedical, under the Canadian Population Health Initiative, we will undoubtedly be funding actual biomedical research to inform the connections between the various determinants of health and how that explains the actual health patterns of the population we're observing. So there is this back-and-forth relationship of both research and analysis that I think provides the links there, and those are further outlined in subsequent pages.

In summary, Mr. Chair, basically we are in full support of this legislation and we see a very fruitful opportunity here to coordinate and cooperate with the emergence of CIHR. I'll just say that as we anticipate, in the spirit of this legislation, that there will be some sort of population health institute formed, once that funding is fully flowing, we would intend probably to wind down the population research funding aspect of our operations, so that there wouldn't be two organizations in the country trying to do the same thing. Then the CPHI would continue with the other aspects of its mandate.

Thank you.

The Chair: Thank you very much, Dr. Millar. I'm just a farm boy from New Hamburg, so I didn't quite catch that term. Was it “interdigitating” you said?

Dr. John Millar: Between the digits.

The Chair: I see.

Dr. John Miller: Shaking hands. There is a more medical interpretation of it, but...

The Chair: Thank you very much, Dr. Millar. We'll maybe discuss that later.

Let's move on to the National Council on Ethics in Human Research. Dr. Janet Storch is with us today. She's a director of the School of Nursing at the University of Victoria. Welcome, and thank you for appearing.

Dr. Janet Storch (President, National Council on Ethics in Human Research): Thank you very much for having invited the National Council on Ethics in Human Research to comment on such an important and exciting event as the creation of CIHR.

I appear before you as president of the National Council on Ethics in Human Research. The council was established in 1989 and is currently sponsored by Health Canada, the Medical Research Council, the Social Sciences and Humanities Research Council, the Natural Sciences and Engineering Research Council, and the Royal College of Physicians and Surgeons of Canada.

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In the booklet that was distributed to you, the mandate and the mission of the National Council on Ethics in Human Research is on the front page: it is to advance the protection and promotion of the well-being of human participants in research and to foster high ethical standards for the conduct of research involving humans. NCEHR fulfils this national mandate primarily by working with Canadian research ethics boards.

You may remember that in 1996 a subcommittee of this standing committee recommended that Health Canada review and strengthen the mandate of the National Council on Bioethics in Human Research, and that's now known as NCEHR, to clearly establish the objective of promoting harmonized national standards of ethics in research involving humans. In our presentation today we want to emphasize the need to strengthen the mandate of NCEHR in order to ensure that the standards of ethics in research involving humans are enforceable and that they apply universally.

What are research ethics boards? Let me comment on that a minute. The research ethics boards, which we call REBs, are a societal mechanism established to ensure the protection of Canadians participating in research. REBs have the power to approve, reject, request modifications to, or stop any research that's undertaken in an institution. They ensure that any risks participants may incur are warranted in relation to the anticipated benefits. They require that risks be minimized and benefits maximized. They also ensure that the informed consent document explains to the participant the true nature of the research, that it describes the expected level of participation and clearly conveys the risks and benefits. Finally, they also conduct monitoring of approved research protocols.

We estimate that there are over 300 REBs in Canada. REBs are established in universities, in governmental and community organizations, as well as in university and community hospitals. They are typically composed of at least five volunteers representing research disciplines, ethics, law, and usually one or two community members.

NCEHR offers education and advice to these REBs through training workshops, through publications, through a list serve, and answers to individual queries. It also conducts site visits to these institutions with REBs in order to review their procedures and to offer advice on how they might be improved. A report containing recommendations is then forwarded to the institution following the visit. However, at this time these visits happen only if the institution invites us to come. Furthermore, NCEHR currently lacks the authority to enforce the findings of these site visits.

In addition to institutional REBs, there are company-based and private for-profit REBs that have developed over the last few years to allow privately funded research to be reviewed in a timely fashion. For a fee these REBs will review research that in some cases could not have access to institutional REBs. These private REBs are not subject to public oversight and they fall outside the program of site visits established by NCEHR.

A report published last year by the Office of the Inspector General at the United States Department of Health concluded that the system of research review was in jeopardy. The REBs were reviewing more and more research with insufficient resources. They conduct minimal continuing review of these research protocols, face conflicts that threaten their independence, and are offered insufficient training. Those were the findings in the United States.

Our own assessment of the situation in Canada based on our site visits and other interactions with the research ethics boards leads us to believe that our system suffers similar problems.

NCEHR welcomes the development of the CIHR as a major achievement in health research. It will bring an increase in public and partnered funding for research. These developments mean that there will be a need for more human participants to be involved in the research. Hence the REBs will have more research to review and continue to need advice and education.

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We are pleased that in Bill C-13 attention has been given to ethical issues. We ask that this attention to ethical issues be extended further to specify the protection of human participants in research. NCEHR is also concerned with the current version of a report prepared by the interim governing council's subcommittee on ethics, which suggests that CIHR may undertake the oversight of ethical issues, including accreditation of REBs.

We believe that the organization involved in the protection of human subjects in research should be separated from the funding of research and cover all research activities, including governmental and privately funded REBs. Only through this separation can the research enterprise deserve the public trust. Maintaining the public trust will benefit researchers in significant ways, including successful recruitment of research participants for their research.

NCEHR's relative independence from the research funding aspect of the councils affords us a level of scrutiny and understanding that is critical to ensure the national advisory function is not biased. Further, NCEHR's experience in working with the grassroots entities designed for the protection of human subjects provides us with a level of insight into current research ethics issues that the granting councils do not and cannot have.

In their evaluation of research protocols, the REBs are guided by ethics guidelines and other documents. The Medical Research Council and the Social Sciences and Humanities Research Council have shown leadership in developing ethics guidelines to protect participants in research. When revising its policy, the Medical Research Council realized that an ethics review system relying on autonomous review by local research ethics boards required ongoing support and information exchange.

In 1998, MRC, SSHRC, and NSERC released the “Tri-Council Policy Statement for Ethical Conduct in Research Involving Humans”, and although this major achievement was initially met by mixed feelings in the research communities, it is now being implemented in universities and in institutions receiving grants from the councils. However, it can only be enforced in the case of research funded by these agencies. The consequence is that Canadians participating in privately funded research are not protected by these ethics guidelines. More and more privately funded research will be reviewed by private research ethics board, which fall outside the current system of oversight of REBs.

Our recommendations then are three. The first is the need for an independent body with a national mandate in order to maintain the trust of Canadians and their confidence in the safety of research activities involving humans. It is essential that ethics functions that rely on the protection of human participants in research be entrusted to an independent body such as NCEHR and endowed with a national mandate that cuts across disciplines and sponsoring arrangements. NCEHR is the only body charged with a national mandate to advance the protection of human participants, whatever that source of funding.

Our second recommendation is that the CIHR should avoid undertaking ethics functions that conflict with their mandate. We are concerned that the development of the ethics functions in the CIHR will extend outside their area of authority, which could have deleterious effects. We consider that some of the important ethics functions, namely ethics review and quality assurance, which could include accreditation of REBs, should be undertaken by an independent body in order to maintain the trust of Canadians. We think also that the development of a national advisory function relative to research ethics would best reside in an independent body such an NCEHR.

Our third recommendation is that Bill C-13 should mention the obligation to ensure protection of research participants. We think that Bill C-13 should require the CIHR to ensure that efficient, independent, and universal ethics mechanisms are in place to protect human participants in research they fund.

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At this time, when there is much restructuring going on among all those involved in activities related to the ethics of research, we are hopeful that it will result in an improvement of the current system of ethics review and protection of Canadians involved in research. This is much needed in order to deserve and to maintain the trust of Canadians towards health research.

Thank you very much for your attention.

The Chair: Thank you very much, Dr. Storch, for those comments. We appreciate the input.

We'll now move to the president of the Social Sciences and Humanities Research Council of Canada. With us is Dr. Marc Renaud.

Dr. Renaud, s'il vous plaît.

[Translation]

Dr. Marc Renaud (President, Social Sciences and Humanities Research Council of Canada): Thank you and good morning, ladies and gentlemen. Thank you for inviting me here. Today, I'm speaking to you as someone who is wearing many hats. First of all, I'm a researcher in the field of social sciences and health. I've established at the University of Montreal a research centre where some twenty people are involved in research in a variety of disciplines.

Secondly, as was just mentioned, I'm the President of the Social Sciences and Humanities Research Council of Canada, the principal granting council for 20,000 researched or 50 per cent of all universities in Canada.

Thirdly, for the past year, I've been a member of the CIHR's interim governing council.

Finally, I'm also here speaking to you today as a Quebecker. As such, I am seeking some assurances that Quebec's francophones, who have made up scientific ground at a phenomenal rate over the past 15 years, will not be left behind as a result of the new legislation.

Therefore, I'm wearing all of these hats today. I'd like to tell you why I'm pleased with this bill. I'm happy to talk to you about it today, but I wasn't happy at all a year ago.

[English]

The feeling I had a year ago was basically that this whole business of the CIHR was there to put more money into medical doctors' pockets, that it would be increasing the grants—which I'm not denying should be increased—but was not accomplishing much. So when 50 of us had a big meeting with Allan Rock, I thought I was speaking on behalf of the social sciences and humanities community by saying we will step into this on two conditions: that the CIHR be transformative and that they be integrative—that they be transformative and they bring us to do research in the health sector in a different way, and that they be integrative

[Translation]

provided, of course, all social sciences and humanities disciplines are integrated.

[English]

I must admit that I'm actually impressed by the work we've done at the IGC. In the beginning it was painful, and I can give you anecdotes on this. There was all kinds of infighting and tension, but we amazingly bonded together through time, because we tried to accomplish a dream. The CIHR is a bit of a dream. It's not concrete now, and that's why this law is in front of you. The dream is to try in Canada—which is a strange country, it's so long—to pull our financial and intellectual resources together in such a way that we would be capable of making discoveries here that would be at the cutting edge of the world, and from which our compatriots would benefit, in terms of health, and the inhabitants of the planet would also benefit.

I think that's the bottom line of the CIHR. It's that dream of connecting people in such a way that we accomplish more in the discoveries than we've ever done in the past. One key component of that dream is that we join hands, the biomedical researcher as well as the social sciences and humanities researcher. This is, for me, the reason why I'm so happy about this legislation.

About a year ago I visited the National Institutes of Health in Bethesda, near Washington. I met with the brass of the NIH and I said to them, what would you do if you were starting from scratch? I was amazed by their reaction. They said, Jesus Christ—excuse my vocabulary—you're lucky in Canada if you're starting from scratch. If you're starting from scratch, please don't do as we did, building silos. Be absolutely sure to lure together the biological and the social sciences, because this is where world research is heading. And this is what the CIHR is trying to do.

There are about 2,000 researchers in the social sciences and humanities field. In the biomedical world, there are about 3,000 or 4,000. The difference, of course, is that we're much more dispersed, we're not working on it full-time because we're not as well financed, and we don't know each other as well as the biomedical community does. We're a bit at the fringe of health research, and yet I think we're important. What CIHR brings to us in the first few moments is a research capacity to build the manpower, to build the networks, in order for us to accomplish that dream.

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What will we accomplish? I'm sure you're all convinced there is much more to health than health care. I'm sure you're all convinced research should not be on curing diseases when they occur; it should also be about the determinants of health that John talked about, and why it is that some people are healthy and others are not. It should be on the organization of medical services. It should be on how people cope when they are caught with a problem with the medical system or the social work or the nurses or what have you. The idea of CIHR is, again, to bring this together.

Let's put forward a little scenario. John was talking about population health. Population health is a field that has made really major strides in Canada. A Canadian has published a book that has been a best-seller in the anglophone world. When translated in French, it was a best-seller in Paris, which is not easy to do for an English-based book. What the book shows is that we now have a really concrete understanding of the reasons why some people are healthy and some others are not.

Where knowledge is progressing the most is in understanding the biological pathways—and we're a body above all—by which the social environment affects our health. By luring together people in psychoneuroimmunology—working on how the body processes the environment—and people in the social sciences who are looking at how poverty and a place in the hierarchy influence one's health, we can accomplish absolute marvels in terms of understanding and therefore eventually of action.

Think about aging. We have people, very good medical researchers,

[Translation]

working on such problems as Alzheimer's and seeking to understand what causes the brain and other parts of the metabolism to degenerate.

The CIHR initiative proposes to have researchers rub shoulders from time to time with people studying the institutionalization of the elderly and how the elderly are cared for in our society. These institutes will give my social sciences students the opportunity to meet once a year with other students to discuss the problems associated with aging in terms they can relate to.

Consider cancer. There is no question that cancer is the most terrible of all diseases afflicting mankind today. Substantial sums should be invested in cancer research. However, at the same time, we need to put ourselves in the shoes of cancer victims. Researchers and doctors need to understand how pain works. They need to understand how people cope with their illness.

[English]

My colleagues in the humanities work a lot on these kinds of questions. I think of Susan Sontag's Illness as Metaphor, a major book that compared cancer with tuberculosis at the end of the century, and compared how people live. I think of Elizabeth Kubler-Ross's work on dying, on describing the state of dying.

So what we're saying with CIHR again is that we're going to begin to pull together the biomedical interests and the social and human interests around health, and I really think we can accomplish a lot with this.

Yesterday, SSHRC released a report that was on the front page of the Ottawa Citizen. It said the biggest surprise in studying the 1991 and 1996 censuses, while doing an in-depth case in British Columbia, was that the most employable people now, contrary to myth, are people in the social sciences, more so than people in engineering, more so than people in the sciences, more so than in the humanities as well. It's not a tremendous difference, but the difference exists. It's really contrary to myth.

Why is that? We all know we're living in an information age. We're living in a world that's changing immensely because of the web, e-mail, and all these technologies that are emerging.

[Translation]

If this is the information age, it is also the age of information overload. People are bombarded with information. Consider a couple struggling with the negative results of an amniocentesis and faced with deciding whether or not to abort the fetus. This couple must look deep within their souls and decide whether the disability is compatible with life. Dr. Storch alluded to this earlier. Consider the countless ethical choices we are called upon to make everyday in the health field. Just think for a moment about the WTO negotiations.

We have reached a period in our history when, as individuals, organizations and communities, we are constantly asked to make choices and difficult decisions, even though we cannot control the flow of information. As I see it, this is the most basic kind of contribution that people in the social sciences and humanities field can bring to the process of establishing these institutes.

A number of my colleagues have said to me that people in the social sciences and humanities field are a rather odd sort.

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[English]

We're a little crazy. A friend of mine said to me the other day that I should create a new discipline in the social sciences and humanities called psychoceramics. I beg your pardon? Psychoceramics? He said, yes, psychoceramics, the study of crackpots.

Voices: Oh, oh!

Dr. Marc Renaud: I thought that was a good joke actually, because there's no way to innovate without cracking a few pots. In a way, the CIHR is doing some of that.

You people in the legislature are going to give us la loi cadre to help us develop this. During that time, the IGC and the CIHR secretariat will have worked a lot in trying to develop the right programs for us to get there. We call them the transition programs because they're going to bring us from where we are to where we want to be. Those programs are extraordinarily appreciated on my part of the planet, first of all because they allow us to build research capacity. We're coming into 2000, but, again, we're dispersed, we're not organized. Secondly, we need to build networks and we need to build more research centres. All of these transition programs will lead us there.

When I think of this whole thing, I tell myself that in the past century the hard sciences have made the really hard, major discoveries. Think about the genome. Think of the big bang. Think of the theory of relativity. If you compare the social sciences and the humanities, they have had insights but they haven't made major discoveries. I don't know. Think of the Gestalt theory in psychology, Freud's psychoanalysis, the welfare function in economics, the sociology of bureaucracy, intelligence tests, or polling theory and techniques. All of these things were insights, but they were not discoveries of the scale that the so-called hard sciences achieved.

My belief is that not now, but ten or twenty years down the road, because of the fact that Canada is merging together the social human sciences and the biomedical sciences, perhaps we're going to see discoveries of the same scale coming out of the social sciences.

[Translation]

Thank you.

The Chair: Thank you very much, Dr. Renaud.

[English]

An hon. member: Hear, hear.

The Chair: Well, thank you very much.

I think we should—

Mr. Réal Ménard: That's not only because he's from Quebec.

Voices: Oh, oh!

The Chair: He spoke on behalf of all Canadians, Monsieur.

I do know there were some growing pains early on, so I'm very pleased to hear you say those have been resolved and we can move forward in a very positive way. I think that's very good news.

Let's move on to Alan Patt, vice-president of the Juvenile Diabetes Foundation of Canada.

Mr. Patt, please.

Mr. Alan Patt (Vice-President, Juvenile Diabetes Foundation Canada): Good morning, and thank you very much.

The Juvenile Diabetes Foundation Canada is grateful for this opportunity to comment on the proposed legislation, Bill C-13, enacting the Canadian Institutes of Health Research. JDF is a voluntary health organization comprised of chapters across Canada and around the world. Our sole mission is to find a cure for diabetes and its complications through the support of research. JDF gives more money directly to diabetes research than any other non-profit, non-governmental health agency in the world. Indeed, since its founding in 1970, JDF has contributed almost $650 million to diabetes research, including $112 million this year alone, $6.8 million of which is funding Canadian scientists.

Diabetes is a chronic metabolic disorder, an autoimmune disease that adversely affects the body's ability to manufacture insulin. Diabetes can be treated and managed to a degree by multiple daily insulin injections, but insulin is not a cure.

There are 2.25 million Canadians with diabetes. To put it in terms that perhaps the legislators would understand, that's 8,000 constituents with diabetes. More than 60,000 new cases are diagnosed each year, and diabetes is a disease that does not differentiate between gender, age or race.

Diabetes has both a health and an economic impact on Canadians. Diabetes reduces life expectancy by up to 30%. It is a leading cause of blindness and of end-stage kidney failure; in fact, 40% of all new dialysis patients are diabetic. People with diabetes are two to four times more likely to die from heart disease or stroke. It is the leading cause of non-traumatic amputations, with more than half of all lower-limb amputations in Canada occurring amongst people with diabetes. It is a leading risk factor for premature development of heart disease in women, with more Canadian women dying from diabetes and its complications each year than of breast cancer, AIDS, and lupus combined.

Diabetes has reached epidemic proportions within the Canadian aboriginal community. And according to Health Canada's own statistics, diabetes costs Canada $9 billion per year in health care costs and lost productivity.

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Before going further, it is important to note that dollars raised in Canada by JDF stay in Canada to fund Canadian research. We are doing our part to raise money to support Canadian research to find a cure and prevention for diabetes and its complications. We believe strongly that the creation of the CIHR will provide the environment for increased investment and basic clinical research to allow the government to partner with us and to do its part. JDF believes Bill C-13 is well balanced and provides the flexibility to move research forward.

On November 19 of this year, the Minister of Health, the Hon. Allan Rock, announced a $115-million, five-year Canadian diabetes strategy. Essential elements of this strategy include a national diabetes surveillance system and an aboriginal diabetes initiative to focus on issues of education, awareness, diet, and exercise. The government is to be congratulated for this initiative. However, this announcement does not include any moneys for diabetes research and does not have a focus, as indicated in the budget documents of 1999 outlining this initiative on the “unique needs of juvenile diabetics”. The only answer to the unique needs of juvenile diabetes is a cure. It is JDF's world-renowned expertise that allows us to say with confidence that it can only be through scientific research that a cure will be found.

To date, the focal point for diabetes research from a government perspective has been through the Medical Research Council of Canada. Indeed, JDF and the MRC have successfully negotiated two partnership agreements in the last five years, totalling $12 million. These partnerships, subject to the MRC's peer review process and to JDF's unique peer and lay review processes, fund the world's most innovative, cutting-edge research right here in Canada. The MRC has called JDF's process of attracting and adjudicating scientific research proposals one of the best.

In recent years a series of unacceptable budget cuts to the MRC threatened the viability of Canadian research. The difference in per capita spending on health research between Canada and other western industrialized nations was at an all-time low. For example, in fiscal 1994-95, the Government of Canada, through the MRC, spent $1 on health research per capita for every $6.50 spent in the United States through the National Institutes of Health. By 1997-98, that ratio had fallen to $1 per capita in Canada as compared to $8 in the U.S. In each of the last two years, the U.S. has increased funding to the NIH by 15%, representing an additional $2 billion U.S. for health research. If we use the 10:1 ratio in population, U.S. to Canada, the impact of that increase is that the one-year growth at the NIH for each of the last two years is almost equivalent to last year's total MRC budget of $250 million.

The turnaround in the 1999 federal budget is indeed an important step. The CIHR target budget of $500 million is a very important first step, but it must be sustainable and it must continue to grow.

Children with diabetes and their families now turn their attention towards the creation of the CIHR. I should know. I was diagnosed with diabetes during my childhood years. Since that time, my family and I have lived with the constant threat of complications and early death. In spite of five insulin injections per day into my stomach, seven finger pricks per day to draw blood and analyse its sugar content, and rigorous control over my day-to-day and moment-to-moment actions, I still have a very uncertain future. It's only research that gives me hope that I'll live long enough to see my 16-month-old daughter Madeleine graduate from university. The statistics say the odds are not in my favour.

At JDF, we believe passionately that the creation of the CIHR will meet our desire for a concentration of independent research in a virtual setting. It is this unique form of scientific research that will hopefully allow us to look back at Banting and Best not as the last great point in Canadian diabetes research, but rather as the starting point that took us to today and to the cure of tomorrow.

The CIHR is not about the Canada Health Act. It is not about provincial health care funding. It is not about creating bureaucratic entities. The CIHR is about making Canada a world leader in biomedical research. It is about ensuring that Canada's best stay in Canada. It is about partnering with organizations, such as JDF, that have a sole focused mission on research. It's about hope. For some of us, it's all we have.

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We ask that as you vote on Bill C-13 at the committee stage and in the House, you promise to remember the children and their families who suffer from diabetes and look to the CIHR as their hope for a better future.

We ask that you challenge the government to ensure that funding to the CIHR is sufficient, sustainable, and will grow year after year.

We ask that as deliberations proceed on institute design, consideration be given to establishing an institute with a focus on the needs of Canadians with diabetes. Our children need your support.

Thank you.

The Chair: Thank you very much, Mr. Patt. We appreciate your comments.

We'll now move on to Dr. Pisterman, who is a member of the Network for the Advancement of Health Services Research.

Dr. Susan Pisterman (Member, Network for the Advancement of Health Services Research): Thank you very much, Mr. Chairman. I'd like to thank you all for inviting us here today to appear before the Standing Committee on Health.

I'm pleased to be representing the Network for the Advancement of Health Services Research. We refer to ourselves as NAHSR, or the network, not to be confused with the movie The Network. That was around a while ago, for those of you who were watching movies at that time.

I would like to say, Marc, that as a psychologist I would line up to be the first pot to crack if there were a chance of finding some wonderful new and effective cures for all the mental health conditions many of us suffer from, in one way or another.

Our network is a coalition of 15 organizations that represent researchers and research consumers across a broad spectrum of disciplines. These disciplines include the social and behavioural sciences, health care research, health services administration, and management.

Our constituent organizations strive for the betterment of the health of Canadians through health promotion, effective and efficient health care, relevant and evidence-based health policy, management, and services. As such, its members produce, contribute, and also use the continuum of health research from benchside to bedside, to the board room and the community.

The Canadian Institutes of Health Research, by their establishment through Bill C-13, have the potential, we believe, to truly advance the health of Canadians through research that draws on the best talent in our country and acknowledges—and this is very important—the contribution of all disciplines in addressing the increasing complexity of health issues.

We would like to stress the point that health issues are not simple and they don't call for simple answers. Only through the coordination and cooperation of all the disciplines and what they can contribute can we truly find the solutions we need, not only now but for the future. We can't even anticipate at times what the future is going to bring. So this has to be a very broad initiative we support.

The network applauds many features of Bill C-13. I'd like to mention a few of them specifically. We applaud the reinvestment of federal money into health research and the broad vision of health enshrined in the bill.

We applaud the inclusive and integrative model explicit in the expectation that all health disciplines and stakeholders will contribute to the governance, operation, and health research activities of the CIHR.

We applaud the commitment to develop research capacity by not only providing a nurturing environment to further current strengths, but also by creating an enabling environment to build capacity in areas of unrealized potential.

We applaud the provisions for flexibility—this is very important—in the potential reorganization and creation of new programs and institutes that can address and anticipate emerging health issues. We want to ensure that flexibility is built in at the very beginning so we don't have to recreate as time goes on.

The consultative process that has characterized the development of the CIHR to date augurs well for the potential success of the broad and embracing vision of the CIHR.

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We believe the proposed bill in principle is enabling and has the potential to transform health research in Canada to advance the health of Canadians. We further believe the bill can be strengthened, and I will speak to those issues now.

You have already heard from many of the members of our network, including the Canadian Healthcare Association and the Canadian Nurses Association, and we strongly support their comments and recommendations. As such, the recommendations I'll highlight today on behalf of NAHSR are drawn from the principles set out in a document entitled “Framework to Evaluate the Canadian Institutes of Health Research”. That document is available for your reference at the clerk's desk, as well as a copy of my speaking notes.

This document was developed by the network, and it identifies guiding principles and criteria for the evaluation of the governance and organization of the Canadian Institutes of Health Research. This document has already been referred to in a number of the briefs you've heard.

We would like to make four very specific recommendations. These are drawn from key principles that are outlined in NAHSR's evaluation framework, and we believe they are at the root of the vision and the model of the CIHR, as proposed in Bill C-13. We believe these recommendations strengthen the bill. We believe they are the logical extensions of the principles that are inherent in the bill, and they ensure consistency between the principles, the governance, and the organization of CIHR.

The key principles to which I refer are the following: a national research agenda, the primary objective of which is to enhance the health of Canadians; interdisciplinarity and representativeness; accountability; and transparency.

Our first recommendation refers to the health of Canadians first. In keeping with a national research agenda that has as its primary objective the enhancement of the health of Canadians, and further acknowledging that the CIHR first and foremost is accountable to the Canadian public whose taxes support CIHR, we recommend that paragraph 4(i) read “encouraging innovations to improve the health of Canadians”. Some of these innovations may lead to the commercialization of health research and contribute to the economic development of Canada.

The point we're trying to make here is that we must always ensure that the research we undertake and support has, as its primary objective, the improvement of the health of Canadians.

We further propose that the listing of paragraphs 4(i) and 4(l)—the latter referring to what we believe are the all-important principles of transparency and accountability—be reversed to unambiguously reflect the priorities of the CIHR.

Our second recommendation regards representativeness that supports a broad vision of health. To ensure that a broad vision of health is represented in all aspects of CIHR and all disciplines and stakeholders can effectively and meaningfully contribute through the governance and organization of CIHR, we recommend that there be proportional representation of women and men in the fields of biomedical research, clinical research, and research respecting health systems, the health of populations, societal and cultural dimensions of health, and environmental influences on health. This proportional representation should be on the governing council, which refers to subclause 7(4), as well as on each of the institute's advisory boards, which refers to subclause 20(4).

We further recommend that there be public representation on both the governing council and the institute advisory boards.

Our third recommendation concerns governance and accountability. To ensure that the governance structure of the CIHR supports maximal accountability within its governing bodies, we recommend that the positions of the president of CIHR and the chair of the governing council be separate and that their respective roles and responsibilities be distinct. This refers to subclause 9(1).

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Finally, recommendation 4 refers to accountability and transparency. To enhance CIHR accountability to Parliament, the health research community, and the Canadian public and to ensure the transparency of CIHR operations, reporting, and evaluation, we recommend that the CIHR undergo objective and independent evaluation every five years. This may be achieved through a parliamentary review process. This refers to paragraph 14(b).

In conclusion, we believe we are at a critical juncture in health care and promotion in Canada. Bill C-13 has the potential for ensuring that health research creation, dissemination, and adoption contribute to the betterment of Canadians' health and indeed the betterment of the health of all nations. We now have the opportunity to establish a world-class health research infrastructure. We hope the committee will consider our recommendations to strengthen this legislation.

We are very pleased to be part of the consultative process and to contribute to the establishment of the CIHR. Thank you very much.

The Chair: Thank you very much, Dr. Pisterman, for those comments as well as the recommendations.

Monsieur Charbonneau.

[Translation]

Mr. Yvon Charbonneau (Anjou—Rivière-des-Prairies, Lib.): Mr. Chairman, could I ask my question now, because I have to leave in a few minutes.

The Chair: Certainly.

Mr. Yvon Charbonneau: If my colleagues have no objections, I'd like to ask Dr. Millar a question. He spoke to us about the Canadian Institute for Health Information. Something he said toward the end of his submission caught my attention. He talked about his institute and the CIHR coordinating their efforts.

This is an important point because in their submissions, some scientists emphasized the importance of passing along their research findings to the public and of applying these results in a concrete manner. At the same time, they expressed some concern about possible increases in management costs, noting that there was sometimes a tendency to view expenditures in this area as administrative, rather than research, expenditures. Apparently, the end result is higher administrative costs.

You talked about your organization playing a role that complements that of the CIHR. Are you saying then that it could assume overall responsibility for disseminating the research findings of the various institutes? Generally speaking, could you take on this mandate?

Could we possibly explore this interesting proposition further? In some respects, it might alleviate the problem of each institute having to hire staff to handle communications. If your institute could see fit to handle the communications side of things, then each of the 10 or 15 different institutes would not have to worry about this. Do you think this would be at all possible?

[English]

The Chair: Thank you, Mr. Charbonneau.

Dr. Millar, please.

Dr. John Millar: Through you, Mr. Chair, to Mr. Charbonneau, we would not be the only ones disseminating this information, but certainly that is precisely our role, to be aware of emerging population and health research, biomedical research, clinical research, and health services research. All of those areas are extremely important to us in fulfilling our job of reporting to the public, the governors, the policy makers, and the provider groups on what is going on in both this country and in another country. That is precisely our role, to disseminate these research results. I think that will also be done by others. CIHR will no doubt have some dissemination function. SSHRC has its own dissemination function. But certainly we see ourselves as an important player in that role.

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[Translation]

Mr. Yvon Charbonneau: Mr. Chairman, could we go so far as to draft a memorandum of understanding to this effect between the Health Information Institute and the CIHR? Would that be at all possible, or do these institutes actually operate on parallel planes?

[English]

Dr. John Millar: I can certainly see us developing formal partnerships that would solidify that, yes.

The Chair: Dr. Millar, do you report directly to Parliament now? I don't think you do, do you?

Dr. John Millar: No, we do not. We operate under an independent governance board.

The Chair: Yet there is federal money involved.

Dr. John Millar: Both federal money and provincial money are involved.

The Chair: So there's federal involvement, provincial involvement, NGO involvement, and private involvement.

Dr. John Millar: There's really no significant amount of NGO or private involvement. At the moment it's roughly 50% from the feds and 50% from the provinces. That's the way it works. Although there's not a formal reporting relationship, there is a regular reporting process to the Conference of Deputy Ministers of Health.

The Chair: Do you anticipate this changing under CIHR?

Dr. John Millar: I do not anticipate it changing. I anticipate it strengthening, actually.

The Chair: I see.

[Translation]

Mr. Yvon Charbonneau: I didn't view this as a formal proposal, but rather as an offer to provide a service to all of the various research institutes, given that it is already set up in such a way as to meet federal and provincial requirements. I simply wanted to highlight what seemed to me to be a meaningful offer to cooperate with other institutes.

It is up to those responsible for administering the legislation to make the necessary linkages, but this does appear to be one option open to us. Instead of operating in a vacuum, we should draw on existing resources. Here we have an institute that compiles information and that could systematically report to others the research findings of the various institutes.

[English]

The Chair: Thank you very much for that observation.

I know, Mr. Charbonneau, that you have to leave because you're hosting the ambassador from Lebanon, so any time you think that's appropriate, we'll certainly excuse you.

For members of the committee, there is lunch at the back of the room. This is a working lunch, as you know. We're finishing up our witnesses today. So feel free at any time.

Mr. Ménard, please.

[Translation]

Mr. Réal Ménard: I have three questions. I enjoyed Dr. Renaud's eloquent presentation immensely. In some respects, it restores our faith in the humanities, a field that is not totally foreign to me, given the fact that I have studied political science, history and law.

As I was saying, I have three questions. We support the principle underlying the bill because we are convinced that the Government of Canada must focus in a major way on research. I believe all parties in the House are of the same opinion on this. Partisanship isn't an issue here.

Have you given any thought to how the provinces could be more involved in the implementation of the bill's provisions? We are concerned that the provinces are being looked upon as mere partners in the process, much like any other partner, whereas we believe they have a key role to play, one that should be clearly defined. Have you given this matter any thought? That's my first question.

Secondly, all of the witnesses that have appeared before us have said that these institutes will operate as independent bodies, but the bill makes no mention of their independent status. Rather, we get the impression that these institutes are by-products of the governing council. What is your take on the situation?

I'd also like to hear your views on copyright in research. How do you reconcile the concern for copyright with the wording of the bill?

Some Hon. Members: Oh! Oh!

The Chair: Mr. Ménard.

Mr. Réal Ménard: I'm asking, Mr. Chairman, because I know he has a very analytical mind and there are too few great thinkers around today.

My next question deals with ethical considerations. I'd like your opinion on one of the problems that this committee will have to address. Should pharmaceutical companies be represented on the boards of the institutes, given that in some cases, there will be conflicts of interests? Since we heard some representations and a recommendation to this effect, I'd like your opinion on this question.

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For my final question, I'm curious about the clear distinction drawn between the position of President of the CIHR and President of the Governing Council? Do you see any advantage to drawing this particular distinction?

These are my three questions, Mr. Chairman, and I think they're quite reasonable.

The Chair: Thank you very much, Mr. Ménard.

Dr. Renaud.

Dr. Marc Renaud: Regarding the role of the provinces, I agree with you that the preamble to the legislation could be somewhat clearer about the provinces' responsibilities for health care, hospitals, clinics and so forth. It could also be clearer about the role of universities. In my view, the legislation should acknowledge at the outset that this partnership is critically important to the future of our health system. Otherwise, the system wouldn't be able to function. I think this needs to be stated loudly and clearly.

What can be done to involve the provinces to a greater extent in the process? I've discussed this matter with officials from Quebec's Department of Research, Science and Technology, using the following example. The health research institutes are set to launch a program next year whereby 140 scholarships will be awarded to students and workers in the humanities field. The amounts of these scholarships will vary anywhere from $40,000 in the case of younger recipients to $80,000 for older recipients.

I asked the Quebec officials whether it would be possible to establish a peer review process at their level and if these scholarships could possibly be converted into chairs. This poses a problem. The federal government endows $200,000 research chairs on the one hand; on the other hand, $70,000 is awarded in scholarships which incidently, are seen as extremely prestigious awards in medical circles. However, such awards as foreign to our field. I told the Quebec officials that perhaps they would be well advised to do an end run around the federal government, make their own decisions and increase their support to universities in this field. These are some valid arguments.

I also discussed the matter with Alberta officials. Similar action could also be taken in that province because it has a granting council equivalent to Quebec's FRSQ.

Personally, I'm convinced that the provinces and the federal government need to establish a better linkage to ensure the future of the health system. However, there is another highly complex issue that government officials are reluctant to address, namely indirect and direct costs. A researcher may have a research team and so forth, but there are also indirect costs to assume, such as the cost of maintaining an office, building a library and so on. The matter of indirect costs has not been clearly addressed. Who should pay these costs? Should it always be the provinces or should the federal government also assume its fair share?

If I'm not mistaken, the legislation is rather vague where indirect costs are concerned, possibly so that health research institutes can eventually absorb some of these indirect costs. That answers your first question.

Regarding the independent status of the institutes, I'm somewhat puzzled because of the structure proposed in the legislation. I can assure you that we thought long and hard about this.

Essentially, the institutes have a central secretariat. The President of the Governing Council and the head of operations are one and the same person, to prevent any political game-playing and to allow this individual and the governing council complete autonomy. These persons establish institutes, which are presided over by someone other than the scientific director or the director of operations, again to ensure better linkage, particularly with volunteer and community agencies and, where possible, to provide for greater participation by the provinces. This structure is patterned on the private sector model where we have a president and CEO. In addition, each institute will have an advisory board.

Unless I'm mistaken—I'm not a lawmaker by profession—I think this structure is logical and will prove to be roadworthy. However, I am concerned that in wanting to do the right thing, the legislators have included too many restrictions in the bill. As you know, the legislation governing the SSHRC is fairly succinct. That's fortunate for us, because things change over time. This particular bill is longer because there are more stakeholders involved and because it will mean a substantial financial investment. Therefore, I'm comfortable with the proposed power structure.

In your third question, you bring up an issue that worries me. Researchers must not enter into a contractual relationship with the institutes. Researchers must receive grants from the institutes, as is currently the case with the Medical Research Council, the Social Sciences and Humanities Research Council and NSERC. A contract binds the researchers. Copyright belongs to the contracting party, not to the person awarding the contract. However, when a council awards a research grant, it must recognize that copyright belongs to the researcher. I'm quite comfortable saying to you that I think the preamble to the legislation should state clearly that health research institutes will uphold the tradition of researchers owning the copyright in their work.

[English]

The Chair: Thank you very much.

I think Dr. Storch wishes to comment with regard to the ethics question.

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Dr. Janet Storch: Thank you.

I want to make sure I understood your question first, so I'm just going to check that out. I understood you to ask if pharmaceutical companies could be represented on the governing board of CIHR. Is that correct?

[Translation]

Mr. Réal Ménard: Do you see any potential conflict of interest?

[English]

Dr. Janet Storch: Let me say that I don't see a problem if they were represented on the governing board. But that would make the case all the more important that there be a very strong, independent entity, such as NCEHR, that could overcome any potential conflicts of interest that might exist there and keep an eye on those possibilities.

The Chair: Thank you very much.

Finally, I believe Dr. Pisterman wished to comment.

Dr. Susan Pisterman: Thank you for the question.

The primary principles are representativeness, balance, transparency, and accountability. We felt that the structure as proposed perhaps overly vests in one person in terms of both the strategic direction and the operations of such an innovative and transformative organization. There are several models we can look at. We felt that in the interests of ensuring those basic principles, by separating out the role of the president and chair, as is done in many other organizations, where one would perhaps be primarily concerned about the strategic direction and the other about operations, we would have a better balance in terms of accountability.

I think it's also fair to say that we're dealing with a very major initiative. Although we can often be lucky in finding all the skills we need in one person, we may be looking also for a different set of skills that are required to ensure the excellence in terms of both operations and strategic direction.

The Chair: Thank you very much.

We'll now move to Mr. Szabo.

Mr. Paul Szabo: Mr. Chairman, the Canadian Nurses Association has raised some concerns about the legislation with regard to the issues of transparency, accountability, etc., as have Dr. Pisterman and others. I think we have to explore them a little farther.

But I think there's something even more fundamental. It has to do with what is the vision and whether there is a consensus as to what the CIHR should be achieving. I think it's in response to the fact that we don't think the existing research environment is a good fit for what our needs are or for what our projected needs will be. I think we have to know a little bit more about that, because I want to ensure that this legislation clearly articulates the vision of the direction in which we're going.

I started thinking about a few things, such as quality of life issues versus quantity of life issues, high-risk research versus low-risk research, and brain drain from juvenile diabetes. Dr. Jeans raised the issue of the importance of longitudinal studies.

There are some competing interests here. I'm not sure if you have to be totally focused on one, but there has to be not only balance but maybe some bias as well to make sure we spend or invest, which is the term I prefer, our limited research resources in areas where the research goes, as a previous group said, from the bench to the bedside, or in fact when it really hits the road and affects the health outcomes of our children and of all Canadians.

So I would ask Dr. Jeans and others who may want to comment to help us better focus on or understand what changes you want to see in the legislation before this committee so that we do not enshrine the problems of the past.

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The Chair: Good question.

Dr. Jeans, do you want to lead off?

Dr. Mary Ellen Jeans: Thank you, Mr. Szabo.

I think I can say with confidence that we feel the vision of CIHR is good and that it will in fact address some of the historical inequities and lack of balance in the health research enterprise in Canada. I think that's why we've made some of the recommendations: to be sure that we in fact operationalize that vision in a way that will make a difference. I mean, I would anticipate, five years from now, a significant increase in research that addresses caregiving, quality of life, relief of pain and other symptoms, coping with aging and chronic illnesses, and so on.

If we don't see that... That's why we've recommended a parliamentary review: so that we have a place to go to, so that we will be able to say to our legislators, we didn't quite get it right, so what changes can be made at this point to get it right? That's why the review and evaluation are critical.

I also want to reinforce the comments made by the very articulate Dr. Renaud, and I mean the whole business of social science and basic science coming together. Nurses are very supportive of that, because for many years, for almost 100 years, the curriculum for nursing has always been half social science and half basic or physiological science.

If only 1% of research has supported nursing research, we can't exactly expect there to have been huge discoveries, but in fact there have been some very interesting ones. Who invented decision-making tools for women who have to make decisions about treatment around breast cancer and other things? Nursing researchers did. Decision-making tools come from cognitive psychology and other disciplines, but they were able to bring those disciplines together to discover something that was really helpful to a group. There are many examples like that.

The vision is excellent. We just want to be sure that (a) the governing council itself is representative... and by the way, I didn't have time to brief my colleague, Dr. Storch, but we would not really support pharmaceutical membership on the governing council. We believe there are other ways in which the private sector can and should be involved in the research enterprise, but we certainly don't want CIHR driven by commercial interests. We want it driven by the interests of Canadians, and that's why we've recommended some public representatives on these councils. But we do believe there should be a way for the pharmaceuticals to interact with the institutes.

I think that's as much as I can say right now.

The Chair: Do you care to add something, Dr. Renaud?

Dr. Marc Renaud: Yes. I would just like to support what Mary Ellen Jeans just said.

I think the CIHR are extremely welcoming of nursing research. When I arrived in the university setting in the mid-1970s, nursing research was practically non-existent. Now it's pretty well developed and it's making a real, key contribution, but it's still invisible, because you're not on the hustings all the time. They're bringing a lot to caregiving as to how you structure the relationship with the patient in the bed in the hospital. In regard to this business of quality of life, quantity of life, the nurses are remarkably well equipped to look at it.

If the CIHR don't welcome the nursing research community with open hands, we're in trouble, because that's certainly one of the goals.

Because you said you were a psychologist, I'd also like to mention that one of the other hopes is that psychologists will stop the infighting. There are two crowds in the psychologist family: some are the psycho/neuro kind of people, the “hard” ones, and then you have the “soft” ones, the social psychologists. For years they have been totally divorced. What we hope is that with CIHR they're going to be reconciled. There's a consensus on that vision. As for exactly how it's going to occur and how long it will take, this we don't know. But something real is happening, I think, in terms of welcoming all kinds of different perspectives.

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You also mentioned something about longitudinal studies. I would just like to add one piece of information on that. Canada has one of the world's best cohorts today on health, which Statistics Canada developed a few years ago. In Ottawa, a few weeks back, we had an OECD conference that SSHRC was hosting. Eighteen countries came. They were really in awe about the kind of data we have in Canada.

But again, the fact that we're marrying people good in statistics—like me—with people who know the body will help us actually be even more penetrating with this. For example, we're capable now of taking people's blood, freezing it, and waiting to have the technology go analyse it 10 or 15 years down the road. Now we are sort of beginning to have the tools and the questions we want to see addressed. Again, we have the tools that will launch those studies. CIHR, in a way, will help us focus.

The Chair: Dr. Pisterman, please.

Dr. Susan Pisterman: I speak to this issue about the integration from my heart, really, because I worked for many years as both a clinician and a researcher. My area of research—I don't want to bore you—is in attention deficit disorder. It's one of those very good examples that show you cannot just take one approach to understanding a disorder or to looking at appropriate intervention. We look at the biochemistry in the brain. We look at genetics. We look at parent training. We look at marital support because we know from a psychosocial point of view that these families are under tremendous strain.

But even beyond that, we needed to look at—and in my own research, we've started to look at it—how you effectively deliver services. Even if we find a cure, whether it's for diabetes or cancer or whatever, we're dealing with people all the time. The big bang comes in these very important biomedical discoveries, and we support them, but you can have a discovery and a cure and a person can decide not to take advantage of that.

It's that melding, that coming together, that opportunity, that we think is enshrined in the structure of CIHR, where all those key players will come together and be able to inform each other, not only with respect to research but to what you actually do now. How do you study whether these discoveries are really making a difference?

The Chair: Thank you very much. I'm going to ask Dr. Storch to close off this part of the discussion, and then I'm going to go to Mr. Earle.

Dr. Storch.

Dr. Janet Storch: Thank you very much.

Just so nobody leaves here thinking nurses are not united, I wanted to speak about the question on the pharmaceutical companies and make it clear that NCEHR doesn't have a specific position on this. I don't want to be misinterpreted as suggesting we do.

We do know that there has to be some way of establishing better partnering relationships with the pharmaceuticals through our work with the therapeutic products protection branch and other issues that Health Canada is dealing with in a very serious way, but whether that means they would be part of the council or not is a question.

I think I will just reiterate the importance of a strong role for an independent organization like NCEHR to watch how the conflicts of interest might be dealt with and to sort those out and comment on that if that's happening.

The Chair: Thank you very much. The record will reflect, then, that there is solidarity in the ranks.

Mr. Earle.

[Translation]

Mr. Gordon Earle: Thank you, Mr. Chairman.

[English]

Firstly I want to thank the witnesses for their excellent presentations. I want to return to the point I was raising with the previous witnesses, and that's around the ethical concerns, because I'm sure we all agree that a very strong component of good research is an ethical code of conduct.

Now, I was mentioning earlier that the tri-council previously put forth a code of conduct or ethical policy, but I was also talking about the fact that it seems to me that there has to be some independence in the sense that a body that's promoting research and monitoring ethics at the same time might be perceived as having some conflict of interest.

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It was pointed out to me that a previous witness, who I guess attended the committee yesterday, spoke about some of the firewalls and ethics concerns that had been built into CIHR. Someone mentioned earlier that there was a paper being done on this issue. I think that still builds upon the tri-council model and is still not as independent as we would like.

Listening to Dr. Storch, it sounds like the National Council on Ethics in Human Research is getting closer to the independent kind of review we've been looking at. But even then, in terms of accountability, I note that your council reports to the Medical Research Council of Canada, the Natural Sciences and Engineering Research Council of Canada, the Royal College of Physicians and Surgeons Council, and the Social Sciences and Humanities Research Council of Canada. So if we replace, as this legislation would, the Medical Research Council with the CIHR, there will still be a tie-in in terms of the reporting structure.

I asked earlier witnesses if there was any merit in enshrining in legislation an independent ethics board that would do the kinds of things your council is doing but report directly to the Minister of Health and be quite separate and apart from the funding body and the council. I'd like to get some feedback on that.

Secondly, someone raised the role of Health Canada and the agency there that currently does some funding. I had that same question in my own mind on what will happen to the Health Canada body once this legislation takes over. Will they be rolled into this or will there be some duplication? I'd like to hear some comments on that aspect as well.

Third, if we have time, is the question of commercialization. I expressed concern earlier about the fact that independent research must be free from any ties with the pharmaceutical companies or any other big company that might have a vested interest. If we're going to have truly independent results, there must be some way of reviewing that in an independent way. The whole question of the goal of this CIHR, with respect to commercializing health research, has some concern for me.

The infighting among psychologists was mentioned earlier. Nobody has mentioned mental health research thus far. I know there's some concern from people within my constituency that mental health research and mental illness not be lost in this concept, but that it be given some priority in terms of how the CIHR is going to function.

The Chair: Thank you very much, Mr. Earl.

Dr. Storch, would you lead off, please?

Dr. Janet Storch: Thank you for the question. It's an excellent observation. Something our council of 20 members across Canada, who represent a range of researchers, ethicists, lawyers, and others, has been struggling with for some time is the reporting relationship that exists, because it has an inherent tension in it. There are two “goods” going on here right now. It's good to do research. We need the research and we want to improve the health of Canadians. But the other good is to make sure the research subjects are well protected. You're quite right that this arrangement doesn't do it, as it stands.

At the present time, our council has taken a pretty strong stand to say that has to be changed. In addition to that, the tri-council group has undertaken, along with Health Canada, a governance study that's ongoing as we speak. It will look at this whole arrangement to see what would be a good recommendation. This is based on the reference I made to the United States as well. They've just tried to look at that and move this reporting relationship further upstream, if you will.

Our own stance so far has been that perhaps reporting should be to the deputy minister of health or the Minister of Health, but that still doesn't quite address your second question, which is “What about the research in Health Canada?” I can only say we are studying right now how we would do that and where the best reporting relationship might be. It's the sincere desire of our council members that we somehow move to a position where we can be more independent. I don't know if one ever accomplishes total independence when it's government money, but we would like to see a different situation.

The Chair: Thank you very much.

Dr. Renaud.

Dr. Marc Renaud: Yes. Your question is so good on the ethics front. All the partners that support NCEHR have commissioned a study of governance because we don't know which way we should go. One road could be the way animal care is structured, where you have an independent board looking at it. Another road could be for the councils to internally strike a mechanism, where you could guarantee that the decisions would be looked after.

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We took the best proposal we had so that somebody gives us an opinion on this, because it's a really good question, and we have to answer it now, before problems occur.

As to the question of whether it should be enshrined in legislation or not, I am hesitant. I'm really afraid that when things get into law, it's so difficult to change them afterwards. Suppose we took the wrong path; it's difficult to come back at it. But again, it's more your métier than mine.

On the Health Canada issue, Health Canada stands to benefit from CIHR in that the labs of Health Canada will be more peer-reviewed than they are now, and the researchers within them will be more brought into a competitive process, which is not the case right now. As far as I can see, they do have problems with their labs. The hope of Health Canada—and I imagine they will tell you this—is that

[Translation]

as we move along,

[English]

as CIHR develops, you're going to get the lab people involved in some of those institutes as well, and the outside research and the internal research will better marry each other. I don't know if the Health Canada people have testified, but I think that's what they would answer.

As for commercialization, I agree with what Susan said before. Commercialization is undoubtedly a goal that's secondary to the goal of raising people's health. There's no question about it. At the same time, we have to be careful not to kill the baby with the water. How do you say it in English?

A voice: Throw out the baby with the bathwater.

Dr. Marc Renaud: When Merck Frosst discovered the pill for asthma, I was damn happy. I'm happy for people who suffer from asthma, and it's very good for Montreal, because it creates jobs. So you know, it's for real. So commercialization should not be seen as a horror story. It has to occur, but it is secondary to health.

As far as mental health is concerned, I'm 100% behind you, but this is exactly where we are at now. We don't know what to name the institute. We're in the process of creating the institute. That's where these decisions would have to be taken. Should there be an institute of mental health, yes or no? This will have to be answered down the road.

The Chair: Thank you very much, Dr. Renaud.

Mr. Szabo, I think you said you had another question. Are you still eating your sandwich?

Mr. Paul Szabo: I'm now up to the muffin.

Voices: Oh, oh!

Mr. Paul Szabo: I can't wait to read the transcript.

There's no doubt that throughout these hearings this has been a process of celebration more than it has been an interrogation of a piece of legislation. That's good to the extent that it's going to provide a framework for doing more things. On top of that, all of this dialogue obviously is going to be equally relevant to the governing council as they start dealing with divvying up the pie, as it were.

So as long as we're all celebrating this legislation, I would like to ask whether the witnesses would like to comment on something the health department said to this committee in January 1994: that we spend about 75% of our health care dollars on curing problems, dealing with disease—75%—and 25% is prevention. They concluded back then that it was an unsustainable distribution of resources. It's plagued... or maybe not plagued, but it has come up so many different times in terms of the balance between prevention and cure.

Our research dollars are going to have to compete on the basis of what is looking for prevention and what is looking for a cure. If I were to pick something, certainly with diabetes, if you look at the fundamentals of the numbers, there is no question; probably three-quarters of Canadians are touched directly or indirectly by diabetes. Or there's breast cancer. More women die from breast cancer than people die from AIDS, and yet the funding of AIDS and breast cancer is totally unreflective of the health realities.

So are we in a position to also bring into this new environment of research a little bit of wisdom we've learned over the years, over history, about the appropriate balance between prevention and cure and maybe priorities of quality of life or relevance to the health realities of Canadians?

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The Chair: Dr. Pisterman, would you lead off? Then it'll be Dr. Millar.

Dr. Susan Pisterman: I really appreciate your comments, Mr. Szabo. I think that's why we feel so strongly about enshrining the representation where the decisions are being made—on the governing council.

We had some discussion about whether we should go so far as even indicating that the funding should be proportional as well. We backed off on it.

It's an important question, but I think we're hoping that with proper representation on the governing council those issues will be sorted out from an operational point of view. That's where the appropriate representation and this discussion, which I think is paramount to the future of health in Canada, will take place.

And they're very tough questions: what do you do when someone's at your doorstep, dying, and needs an intervention versus all those kids who are being born and need to be educated about safety, nutrition, etc.? I don't have a good answer.

The Chair: That's a very complex area.

Dr. Millar.

Dr. John Millar: My first comment is that if somebody in 1994 estimated it was a 75-25 split, that was very optimistic. Somebody was using some liberal interpretations of what was prevention, even then.

To answer your question, I think this legislation in fact does offer the opportunity to dramatically shift those expenditures to a more appropriate array. However, it doesn't guarantee it, and I don't think it would be appropriate in the legislation to try to nail down how the expenditures should be made. I think the vision that has been set will do that as long as there's adherence to the vision. Obviously the legislators will have to keep a watchful eye on it. I think the notion of a formal, independent, five-year review of it, brought before the legislators, is a very useful way of achieving that.

The Chair: Thank you very much.

Yes, Mr. Patt.

Mr. Alan Patt: Thank you for the question, Mr. Szabo.

You speak of a number of different issues that are obviously of critical importance, one being the burden of illness and the proportion or representation of dollars that go towards addressing an illness, be it from the basic research side or the cost to the system once one goes into the health care system as we think of it, with hospitals and doctor's visits and so on. There is a disproportion in funding at the moment.

But at the same time, I would think that the vision the CIHR has will address that in a fundamental way, in that, as Dr. Renaud spoke of earlier, the silos will start to disappear. If you're looking at funding diabetes research, the implications of that will obviously be felt right across the spectrum of autoimmune or endocrine disorders. The same can be said for a number of different areas. One of the leading complications in diabetes is heart disease. Any research into diabetes will clearly have benefits in the area of heart disease—and the other way around as well.

You also spoke of the economic versus the societal impact of disease—the costs and the burden—and the impact that research can have. Again, as Health Canada notes, if diabetes costs the system $9 billion, imagine what we could do with $9 billion year after year... the lost productivity, the absenteeism from work, either of those that have the disease or of those that are caring for those with the disease. The economic spinoffs in both ways are enormous. It's the kind of thing that must be addressed, and the CIHR will allow us to address it in ways that we previously have not been able to.

There are still enormous strides that have to be taken, even with this $500 million that has been targeted for it now. We are woefully behind many of our partners in the western industrialized nations, but it's a step, and it's a step that has to be taken—and frankly, it's about time that it was taken.

The Chair: Thank you, Mr. Patt.

Mr. Earle, final question.

Mr. Gordon Earle: Thank you, Mr. Chair.

A lot has been said about transparency and the importance of that in order for this to get off on the right foot. There have been some questions raised around the appointment process. I raised this question earlier with the other witnesses and I'll raise it here. The fact is, the appointments to the governing council will be made by the Governor in Council.

Previous witnesses indicated they were quite satisfied or pleased with the amount of contact that has been made with their organizations and with the requests for names to be submitted. But even with that, to avoid even a perception of conflict of interest, do you think it would be useful to have some kind of conflict of interest guidelines with regard to appointments not only to the governing council but also to the advisory boards and the peer review panels? Do you think it would be good to have a set of conflict of interest guidelines in place so that when people are being selected, hopefully that would keep the conflict or perceived conflict out of the picture and make for a much more ethical kind of process?

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The Chair: Mr. Patt.

Mr. Alan Patt: Notionally, I agree. Fundamentally, there are some challenges.

I'm here in a volunteer capacity as the chairman of JDF. I'm fascinated by the discussion and indeed by the direction the CIHR is taking, because my day job happens to be with a pharmaceutical company. Indeed, I deal with market access issues on behalf of a pharmaceutical company. That means nothing to me here today. I am here in a different capacity. I think many of us wear several hats and do different things in the community in a volunteer capacity or in a professional capacity, whatever it may be. I would not like to think that I would be excluded from the possibility of being involved in the directorship of the CIHR simply because of what my day job happens to be.

Mr. Gordon Earle: Those guidelines need not exclude people, but they set the stage for declarations and so forth. Anyway, continue.

Mr. Alan Patt: Declarations are fine. But again, as Dr. Renaud pointed out earlier, when we're enshrining things in legislation, that leads to other challenges down the road. If we could have some sort of complementary guidelines, I would not have a problem with that, as I say, notionally. I think we have to be very careful how we draft them.

The Chair: Thank you very much. We'll have a final word from Dr. Renaud.

Dr. Marc Renaud: It's just a point of information. When I was named SSHRC's president, what I discovered is that this government is pretty well equipped to check into conflicts of interest. The ethical adviser to the Prime Minister, or whatever it's called, watches us enormously. We have to report to him every year. We have to declare all of our interests, and we have to put money into trust funds. I was impressed by the quality control of conflicts of interest. I would imagine that would be the same for CIHR people.

The Chair: Dr. Pisterman.

Dr. Susan Pisterman: Just as a final comment, presuming this will not be put into the legislation, I think the point is very well taken that it's one of the first tasks that needs to be addressed, because of the importance of representation on the governing council, given its power and authority not only to look at conflict of interest but also to set criteria for the selection of the council, so that it can in fact ensure that we realize the vision we've all talked about today. How we make it happen, as Mr. Szabo was asking, is by having the people with the vision and the leadership who can support what CIHR is modelled to be in the legislation. So I think a set of criteria as well as conflict of interest guidelines are very important.

The Chair: Thank you very much.

I just have a couple of clarification questions. Dr. Millar, I think I heard you say that CIHI would continue to research and analyse the population health until CIHR takes over. Did you say that?

Dr. John Millar: I did indeed. We have a $20 million fund, part of which will be devoted to population health research, but there are three other elements to the mandate that money will be spent on. But the anticipation is that in the interval we will continue to fund population health research and then, depending on what emerges out of CIHR, perhaps wind that down.

The Chair: Is the money you currently spend on population health sufficient in your view?

Dr. John Millar: No, it's not. That's why we're hoping there'll be a more robust flow from CIHR.

The Chair: When CIHR takes over, what will you do with the funds presently devoted to population health?

Dr. John Millar: That has not really been carefully thought out at this point.

The Chair: Finally, in terms of the institutes, should there be a separate population health institute in your view?

Dr. John Millar: My personal view is that there definitely should be.

The Chair: Dr. Pisterman, I think in answering Mr. Szabo you touched on this, as did all of you, with regard to the various groups that should be part of the CIHR, such as ethicists, lay people, researchers, social scientists, and others. I wondered if you had any advice for us in terms of the kind of mechanism we should put in place to ensure that all these groups are taken care of and are in fact incorporated into what we're looking at in this bill. Is there a mechanism that we can look at, Dr. Renaud?

• 1250

Dr. Marc Renaud: Well, the bill already creates structure to protect so-called sectors of research. By law, there is an obligation for the board to create a standing committee to oversee that each sector is indeed well researched. This is important, because a standing committee is like an audit committee, for example. It has power over the board that's not insignificant. It can actually say to a board that we don't invest enough in a sector. So there's that mechanism.

I don't think this one's in the law, but it is in the discussion. The IGC will recommend to the GC that we create an office within the bureaucracy to make sure we oversee the evolution of research in all these sectors.

The Chair: How do we ensure, though, that we get the kind of broad representation that I thought I heard most of you say we should have? Is there a way to ensure that?

Dr. Marc Renaud: The composition of the board is key, but that's a Governor in Council decision. It has to be extremely well balanced. She flagged the point of view that there should be a balance of men and women. I cannot but agree a lot with this. There should be a regional balance, there should be a linguistic balance, and there should be a balance of disciplines. It will be a difficult board to build, but it's really key to monitor this whole system in order for it to blossom.

The Chair: Okay, very good. Thank you very much for all of that.

I certainly appreciate your input today, as do all members of the committee. It was very useful. Your group, incidentally, wraps up our witnesses in terms of Bill C-13.

We're moving to begin clause-by-clause tomorrow, with the minister arriving at 3.30 p.m. We're going to start clause-by-clause at 4.15 p.m., and we'll hopefully get this back to report stage in Parliament as soon as we can.

Again, I want to thank the witnesses for appearing. This meeting is adjourned.