CHAPTER 11:
RESEARCH, ETHICS AND PRIVACY

11.1       INTRODUCTION

Good information is a prerequisite to good decisions… This is particularly true in the case of mental disorders, which until recently have been largely overlooked as public health issues. — World Health Organization[491]

Research is fundamental to developing the quality information needed for the effective planning and delivery of the whole spectrum of mental health services. Research is necessary to:

§         increase the recognition and understanding of mental illness,

§         demonstrate how prevention of mental illness can be best achieved,

§         provide the foundation for strategies for early intervention in mental illness to reduce the severity of illness and lead to faster recovery,

§         develop more effective treatments, and

§         lead to better and more cost-effective interventions through the use of technology.

In recent years, considerable progress has been made in all of these areas. Research done in Canada over the years has contributed significantly, both nationally and internationally, not only to expanding knowledge about how the brain functions, but also to developing new drugs and to the better therapeutic management of mental disorders. This has helped to greatly expand the treatment options that are available to people living with mental illness.

Consequently, it is of utmost importance that Canada devote the resources needed for effective research, disseminate the results of research, translate those results into clinical practice, develop a national research agenda, and collect the data necessary to track mental health in Canada. People living with mental illness are particularly vulnerable and should be treated with special care when they are the subjects of research. This chapter will address each of these issues in turn.

11.2      SOURCES OF FUNDING FOR MENTAL HEALTH RESEARCH IN CANADA

11.2.1    The Fundamental Role of the Canadian Institutes of Health Research

Most research in mental health and addictions in Canada is led by researchers in universities and teaching hospitals, although increasingly it is done in collaboration with colleagues from outside academe.  The federal government, through the Canadian Institutes of Health Research (CIHR), is the major sponsor of this research. CIHR was created in 2000 from the previous Medical Research Council as part of the federal government’s commitment to making Canada one of the top five research nations in the world.

CIHR has divided the full range of health research into 13 sectors, each represented by an Institute.  These Institutes are strategic networks that span disciplinary and geographic boundaries.  One of them, the Institute of Neurosciences, Mental Health and Addiction (INMHA), has become the focal point for research into mental health, mental illness and addiction in Canada. INMHA has a very broad mandate: supporting research on the brain, the mind, the spinal cord, the sensory and motor systems, as well as mental health, mental illness and all forms of addiction. INMHA also works with federal and provincial departments and agencies and with non-governmental organizations to develop and implement strategies for research and the training of researchers.

As with CIHR-funded health research in general, research in mental health, mental illness and addiction encompasses the full spectrum of studies ranging from biomedical, to clinical, to health services, and to population health research. Most witnesses welcomed the inclusion of population health research and health services research in CIHR’s mandate, areas of enquiry that had been excluded from the Medical Research Council’s focus on biomedical research. 

Population health research and health services research remain relatively weak in the areas of mental health, mental illness and addiction.  Dr. Shitij Kapur and Dr. Franco Vaccarino, of the Centre for Addiction and Mental Health, told the Committee of the importance of redressing this situation given the effects of the broader determinants of health on mental illness and addiction.[492]

With respect to health services research, a literature review prepared for Health Canada in 1997 suggested that there is still much to be learned in Canada about best practices in providing care and support to individuals with mental illness and addiction, whether in inpatient care, outpatient care, crisis response, housing, employment or self-help. Even for those interventions where there is the strongest evidence relating to their effectiveness, there remains a pressing need for more detailed information about what works for whom.[493] 

A paper from the World Health Organization backs this finding up, suggesting that there are many gaps in mental health research.[494] According to the WHO,

§         there have been few long-term follow-up effectiveness studies,

§         research into the link between a population’s mental health and public social and economic policies is lacking,

§         the evidence base for some mental health strategies and programs is limited, and

§         data on the relative costs and benefits of mental health interventions are sparse.

Dr. Rémi Quirion, INMHA’s Scientific Director, told the Committee,

There is still a dearth of specific information in this country, regarding incidence, prevalence, treatments, treatment quality, and knowledge transfer.[495]

More in-depth research is essential to generate the results necessary to guide decisions about who should receive treatment and where, what treatment interventions should be provided, and how to provide assurance that the care delivered is appropriate to the particular needs of those living with mental illness and/or addiction.

The Committee recognizes the federal government’s role in creating CIHR and its decision to create INMHA, as well as the contributions of Dr. Rémi Quirion, INMHA’s Scientific Director. Significant progress has been made in the promotion and conduct of research into mental health, mental illness and addiction. Nonetheless, the Committee shares INMHA’s concern that significant gaps remain in our understanding of mental health and addiction, gaps that can be filled only by much more research.

Currently, INMHA is engaged in a priority-setting exercise, seeking input from stakeholders in the development of its second five-year plan. The Committee is encouraged by this process. The Committee would like to note that it recommends in Chapter 10 of this report that CIHR develop a funding stream focused on research into self-help and peer support, a relatively new and promising area of treatment and recovery.

11.2.2   Federal Funding for Mental Health Research

CIHR is the largest public sponsor of research into mental health and addiction in Canada. In 2004-05, it allocated a total of $53.7 million to research in mental health and addiction from its total budget of approximately $700 million.[496]  CIHR spent a further $98 million on research in the fundamental neurosciences, as well as all aspects of clinical, health services and population health research related to neurological diseases and disorders of the senses. 

Approximately 60% of these funds were allocated through INMHA; the rest were allocated through other institutes such as the Institutes of Aboriginal People’s Health, Gender and Health, Health Services and Policy Research, Population and Public Health, and Genetics.  As with all of CIHR’s resources, these funds were allocated in response to applications that were funded on the basis of scientific merit as assessed by CIHR’s international peer review process.  Approximately 30% of these funds were allocated as a result of CIHR’s strategic initiatives.[497]

In addition to CIHR, two other sources of federal funding for research into mental health are the Social Sciences and Humanities Research Council (SSHRC) and the Natural Sciences and Engineering Research Council (NSERC). SSHRC supports research in the broad area of social psychology, and NSERC funds projects relating to fundamental psychological processes, their underlying neural mechanisms, their development within individuals and their evolutionary and ecological context. Neither SSHRC nor NSERC provide significant funds for mental health research. Together they contributed approximately $6 million to mental health research in 2002-2003.[498]

Other federal sources of funds for research into mental health and addiction may include Statistics Canada, Canada’s Drug Strategy (which funds the Canadian Centre on Substance Abuse), Health Canada, Correctional Service Canada (Addictions Research Centre), and the Canadian Health Services Research Foundation. The Committee did not receive information on the levels of funding provided by these sources.

We will return below to the issue of whether or not the level of funding from the federal government is adequate after reviewing the availability of funding for mental health research from other sources.

 

11.2.3   Other Sources of Funding for Mental Health Research

Pharmaceutical discoveries are an important product of research into mental illness, because drugs are an essential component of the treatment options for people living with mental illness. In fact, the pharmaceutical industry is the largest single source of funding for health research in Canada.  In 2004, it invested $1.6 billion in health research and development, approximately 27% of the total spent on health research in the country.[499] Just how much of that funding of research by the pharmaceutical industry in Canada goes into mental health and addiction is not known, but it is thought to be substantial. Because of the strong presence of private industry in this area, the federal government is not a major sponsor of research into pharmaceutical therapies for mental illness. However, recognizing the importance of providing assistance to researchers to turn discoveries into practice, CIHR does provide funding for commercialization activities.

In most provinces, governmental bodies provide funds to support mental health and addiction research (e.g., Fonds de la recherche en Santé du Québec, Ontario Mental Health Foundation, Manitoba Health Research Council, Centre for Addiction and Mental Health (Toronto), etc.). These organizations provide approximately $10 million per year, an important contribution to mental health and addiction research, but well short of the funding from the Canadian Institutes of Health Research.

In addition, many voluntary health organizations (VHOs), such as charities and foundations, can effectively respond to the support needs of different groups of people living with mental illness or addiction. Rarely, however, are such VHOs able to attract sufficient funds to sponsor research in the specific disorders on which they focus. 

Moreover, there are only two national non-profit organizations whose mandates focus specifically on raising money to fund mental health and addiction research: the Canadian Psychiatric Research Foundation (approximately $1.1 million per year) and NeuroScience Canada ($160,000 to mental health and addiction research in 2004).[500] 

Other VHOs collect funds almost exclusively for patient support and treatment.  One of these, the Schizophrenia Society of Canada, has funded a total of 11 research fellows since 1994 using the proceeds of the $1.5-million capital endowment fund initiated by the late Dr. Michael Smith’s donation of half of his 1993 Nobel Prize award.[501]

The Canadian Psychiatric Research Foundation (CPRF) told the Committee that the stigma associated with mental illness and addiction creates significant barriers to its attracting appropriate publicity, getting corporate sponsorship, and raising funds for the support of research.  This experience contrasts with that of other disease groups such as cancer and cardiovascular disease, for which the respective health charities are strong and successful fundraisers and supporters of research:

CPRF faces a difficult challenge in raising awareness and research funds to determine the causes, treatments and ultimate cures for a variety of mental illnesses.  Tragically, the stigma of mental illness persists and as a result, millions suffer unimaginable despair in silence, fearful of adverse personal consequences that public acknowledgement of their illnesses might bring.  Under these conditions, awareness remains low, understanding minimal, support mechanisms few, misconceptions rife and critical funding for research is critically low.[502]

Given the difficulty faced by VHOs in raising funds, the Committee recommends:

53	That the Canadian Mental Health Commission (see Chapter 16) work with non-governmental health organizations to develop and strengthen their fundraising capacities in order to raise more funds for research on mental health and addiction.

 

The federal government could increase the value of the funds available by forming strategic partnerships with the private and non-profit sectors. Patrick McGrath, who holds the Canada Research Chair in Pediatric Pain, told the Committee,

I think that the way to do it [get more money for mental health research] is to help CIHR partner, for example, with others to increase the pie. We do not have enough money in Canada in health research. We are still, even though it has improved dramatically, in the lower third of the G8 countries. It is not a matter of the CIHR having a lot of funding and they could just target that. Certainly targeted funding within CIHR is one good way, but I think it is more useful to collaborate with CIHR and try to grow the pie.[503]

In fact, the main non-profit organization that funds research for mental health, the Canadian Psychiatric Research Foundation, told the Committee that it wants to have more partnerships with CIHR. The Committee believes that the same could be said of the private sector. While CIHR does engage in partnership activities, they could be increased. Therefore, the Committee recommends:

54	That the Canadian Institutes of Health Research actively seek out more opportunities for research partnerships on mental health and addiction with the private and not-for-profit sector.

 

In addition to funding research, voluntary organizations can also play an important advisory role in research into mental health, mental illness and addiction in Canada.  Dr. Quirion told the Committee that when INMHA was created, it sought out and fostered collaboration with 60 volunteer and non-governmental organizations.  These groups participated in drafting the Institute’s strategic plan and in the development of a strategy for increased funding.[504]

People living with mental illness, their family members, and representatives from VHOs told the Committee of their desire to participate in the research process. They are well placed to combat the pervasive lack of understanding and stigma associated with mental illness but feel disconnected from the research enterprise. For example, where appropriate, they could assist in the creation of research questions and their representatives could sit on review panels.  This would allow researchers to better identify priorities and conduct research that is most needed by the mental health and addiction sectors.  Importantly, their participation would reinforce the human aspects of science and be a continual reminder of the need for the practical application of research outcomes.[505] The Committee therefore recommends:

55	That the Canadian Institutes of Health Research formalize the involvement of non-governmental health organizations, persons living with mental illness and family members in the setting of mental health research priorities and participation in peer review panels.

 

11.2.4   Targeted Funding Is Needed

 (…) the funding of mental health and addictions research in Canada is currently inadequate. Mental health and addictions are under funded in an absolute and a relative sense. When one combines this systemic under funding, with the impact of stigma, the limitations of the NGOs fund-raising in this area as well as the lack of commercial incentives for a lot of these activities, the under funding becomes even more acute. Given that the other constraints cannot be easily overturned (stigma, limits to fund-raising in this area, lack of commercial incentives) — it is critical that the federal government show leadership in securing fair funding for mental health and addictions research. —Dr. Shitij Kapur and Dr. Franco Vaccarino

The prevalence of mental illness and addiction in Canada is high and the economic burden enormous.  A study on the global burden of disease estimates that mental illness accounts for 15.4% of the disease burden in established market economies, second only to cardiovascular disease (at 18%);[506] nearly as many individuals battle depression as have cardiovascular disease. The total direct and indirect burden to the Canadian economy of mental illness was estimated to be $14.4 billion in 1998.[507]

Many witnesses have argued reasonably that the huge burden of mental illness and addiction on society should be reflected directly in the funding dedicated to research into mental health, mental illness and addiction. Yet, several witness told the Committee that, applying this principle, the proportion of health research dollars allocated to mental health, mental illness and addiction is woefully inadequate. The Scientific Director of INMHA, Dr. Quirion, told the Committee,

We agree that mental health research funding is insufficient in Canada, given the socioeconomic cost associated with these illnesses. . . . If we consider what we call the burden of disease, cost to society and incidence of mental illnesses, Canada, via the Canadian Institutes of Health Research, CIHR, needs to invest more in mental health research.[508]

The Committee is of the opinion that research in these fields is of enormous importance and that it can lead to meaningful improvements in the lives of people living with mental illness and addiction in Canada.  However, an adequate level of resources must be allocated to make progress.  The Committee is very concerned that adequate resources are not being devoted specifically to research relevant to mental illness and addiction, especially given their social and economic burden on Canadian society.

To summarize, CIHR is the dominant source of funds that are available across Canada for research into mental health, mental illness and addictions. Funds from the private sector are primarily devoted to pharmaceutical innovations, and the provincial agencies are not well funded. Moreover, due to the stigma associated with mental illness and addiction, the ability of non-governmental organizations to raise money to fund research in mental illness and addiction is much less than in other major areas of health, such as heart and stroke, cancer, diabetes and arthritis.  Hence, the Committee is of the strong opinion that the federal government, through CIHR, must accord research in mental illness and addiction higher priority than it currently enjoys.

The Committee is very supportive of the work done by CIHR as a whole and by INMHA specifically. While the Committee could ask CIHR to reallocate resources internally, this would mean taking away resources from other important health areas and potentially starving nascent research communities of necessary funds. Instead, the Committee is of the opinion that additional, incremental funds should be provided to CIHR for the purposes of funding increased research into mental health, mental illness and addiction.

INMHA has a very broad mandate and serves a large research community. The Committee is concerned that simply increasing the funds available to INMHA could result in more funds going to support research in fields such as the neurosciences, rather than to research into the much less well funded areas, such as the psychological and social factors associated with mental illness and addiction, where attention is sorely needed. Hence, the Committee believes that additional funds should be allocated in a dedicated fund, similar to the HIV/AIDS research funding that the federal government already provides to CIHR.

Also, as noted above, the clinical, population health research and health services research areas remain weak in the fields of mental health, mental illness and addiction. It is vital that efforts be made to close the significant gaps in our understanding in these areas, even if it must begin as far back in the research process as with the recruitment and training of first-class researchers. Another factor to keep in mind, as noted in the previous section of this report, is the importance of involving stakeholders in the decision-making process for research priorities. Therefore, the Committee recommends:

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That the Government of Canada commit $25 million per year for research into the clinical, health services and population health aspects of mental health, mental illness and addiction. That these funds be administered by the Canadian Institutes of Health Research (CIHR), through the Institute of Neurosciences, Mental Health and Addiction under the guidance of a multi-stakeholder board and in consultation with the Canadian Mental Health Commission (see Chapter 16). That this $25 million be incremental to the funding currently provided to the CIHR.

 

The total CIHR budget will also affect the funds available for specific areas, including mental health and addiction.  In its 2002 report on the state of the health care system in Canada, the Committee called for an increase in the federal government’s annual contribution to health research to 1% of the amount spent on health care.[509] Meeting this target this year could involve almost doubling CIHR’s budget to $1.3 billion per year from the present level of $700 million.

While the Committee is encouraged by the significant increases in federal funding allocated to CIHR early in its life, this support has essentially plateaued at 0.5% of total health expenditures in the last few years.  The Committee reiterates its strong support for attaining the 1% goal, and recommends:

57	That the Government of Canada, within a reasonable time frame, increase its funding to health research to achieve the level of 1% of total health care spending.

 

A number of submissions to the Committee also stressed the importance of capacity, and some witnesses emphasized that insufficient numbers of physicians are participating in mental health and addiction research and that a major deficiency remains the fact that too few clinician scientists are being trained to carry out crucial clinical trials. Dr. Quirion told the committee,

We hope to be able to convince the CIHR to set aside part of its budgetary envelope for training, and clinical research carried out by mental health and mental illness specialists.[510]

This means not just getting young researchers interested in mental health but also making sure that qualified and experienced clinical practitioners also have opportunities to do research. The Committee shares these concerns and believes that additional funds should be devoted for the recruitment, education and training of more researchers and clinician scientists in order to expand Canada’s capacity to do first-class research in mental health and addiction.  One of the priorities in INMHA’s strategic plan for 2001-2005 is the creation of more training opportunities for clinician scientists. INMHA has already carried out a number of activities in this area, such as its BrainStar program. However, the Committee believes that more can and should be done. Therefore, the Committee recommends:

58	That the Canadian Institutes of Health Research, through the Institute of Neurosciences, Mental Health and Addiction, increase the funds available specifically for recruiting and training researchers and for clinical research on mental health, mental illness and addiction issues.

11.3      DISSEMINATION OF RESEARCH FINDINGS

A major concern of researchers in mental health, mental illness and addiction is that there is currently no central database for all sources of funding.  Neither is there an authoritative source of information on what is being investigated. The Canadian Psychiatric Research Foundation pointed out that there is no coordination among research funding bodies and no central responsibility for data collection.  As a result, researchers find it difficult to negotiate their way through not only the government granting agencies, but also the private and the non-profit sector funding sources. The creation of a central database would not only help avoid duplication and overlap, it would facilitate communication among researchers. It would also help people living with mental illness, their families, and voluntary health organizations know what research was taking place.

Researchers may not be aware of research conducted in other areas of specialization which may affect their work, especially since mental illness and addiction issues cut across a wide diversity of disciplines. Provision of such information could encourage collaboration, enhance productivity and minimize the negative impact of competition among universities and hospitals.  The Canadian Psychiatric Research Foundation recommended the establishment of a central database of research funding agencies that would encompass non-governmental sources of funding, a listing of what and where research is being conducted, and a site for maintaining a summary of research findings.[511]

The United Kingdom has undertaken an innovative approach to ensuring greater coordination amongst mental health researchers. In January 2003, the United Kingdom created the Mental Health Research Network, which is designed to provide infrastructure for mental health research.[512] It acts as a central point of information and reference, connecting service users and care providers to researchers and mental health professionals. It hosts large-scale research projects in mental health that require multiple centres, and conducts much of the governance and financial administrative work on behalf of researchers. The Network currently involves seven research hubs which represent differing geographical and cultural bases. The hubs bring together academics, clinicians, and those involved in health and social care.

The Network was created because small, localized studies were often not conducive to allowing researchers to draw valid, general conclusions. Also, poor integration of resources, experience and expertise limited the ability of some mental health researchers to attract support from major funding bodies. This led to research that failed to inform public policy, and lacked coherence, relevance and credibility with users and professionals.

Setting up a similar network in Canada would take considerable time and effort and would have to be adapted to fit Canadian circumstances. Nonetheless, it should remain a long-term goal.

In the meantime, it may be possible to adopt certain elements. In particular, steps should be taken to: ensure that information about research funding opportunities is clearly communicated to researchers; facilitate interdisciplinary coordination and collaboration amongst the research community; and broadly distribute the findings of research to health care providers, people living with mental illness, and policy-makers.

The Institute of Neurosciences, Mental Health and Addiction does currently endeavour to assist information and knowledge exchange amongst researchers, but not in a systematic fashion. The Committee believes that the work of dissemination would be best performed by an organization that is able to bridge the various levels of government, non-governmental organizations and research institutions. The Committee therefore recommends:

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That the Knowledge Exchange Centre to be created by the Canadian Mental Health Commission (see Chapter 16) incorporate, amongst other things, an Internet-based database of research funding agencies and funding opportunities, identify what research is being conducted and where, and include summaries of research findings from all levels of government, universities, and non-governmental organizations. That the Knowledge Exchange Centre also assist in the exchange of information by organizing conferences, workshops, and training sessions on mental health research.

11.4      KNOWLEDGE TRANSLATION

Knowledge translation is about turning the knowledge gained through research into more effective services and products and, for example, a stronger, more effective mental health system. It involves more than dissemination of information among researchers; knowledge translation involves connecting basic research to clinical practice. Dr. Ashok Malla, Head of Research, Douglas Hospital (Montréal), told the Committee:

We need to define a clear pathway for transfer of knowledge with appropriate training. For example, we need to do studies in early intervention where we involve primary health care, teach them how to recognize mental illness early and then see if we can actually transfer that knowledge generally.[513]

And Ms. Downey, Executive Director, National Aboriginal Health Organization, pointed to the need for knowledge translation to be culturally appropriate:

The relationship between knowledge translation and the need for culturally appropriate delivery of services and supports is recognized in many communities. We know that the mainstream approach to health care service delivery, while it addresses some of the needs, does not address all of them. Approaches that have been targeted towards Aboriginal communities over the last 25 to 30 years, we know are not working. We know that some of the health statistics are worse than they ever were. . . . Evidence-based community research on knowledge translation is necessary to determine the impact on quality of health services and products, and availability and use of cutting-edge research for community programming.[514]

Without effective knowledge translation, ineffective or even harmful treatments may continue, while effective, evidence-based treatments may not be adopted by policy-makers and mental health service providers.

The translation of a new idea or discovery into an accepted practice has three distinct phases.  The first is the basic discovery that identifies, for example, a new genetic association, a new method of delivering care, a new way of engaging patients in therapy or a new idea for using an established treatment. The second phase is proof-of-principle, the clinical trial phase, which involves translating that discovery into care and demonstrating that it works in a controlled setting.  The third phase, dissemination and application, involves incorporating the new practice into the pre-existing continuum of care and the community.[515] 

Eric Latimer, a health economist at the Douglas Hospital, told the Committee that mental illness and addiction research has had many successes at the discovery level, given the funding and number of researchers involved, but that the dissemination and application of discoveries remain major challenges that will be overcome only by greater investment.[516]

Knowledge translation is an important part of CIHR’s mandate. One of its objectives, as laid out in its founding legislation, is to excel “in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system, by promoting the dissemination of knowledge and the application of health research to improve the health of Canadians.”[517] Knowledge translation is also one of CIHR’s three priorities, as outlined in its 2005-2006 Report on Plans and Priorities.

One of the strategic priorities for INMHA is to promote linkage and exchange, through structured knowledge translation programs, between the research community and municipal, provincial and national levels of decision-makers as well as users of research results, including VHOs.

Witnesses agreed that this necessary, laudable goal could not be achieved at current levels of funding.  During his testimony, Professor Tousignant, of the Centre de recherche et intervention sur le suicide et l’euthanasie, suggested that research budgets should contain funds dedicated to “scientific popularization.”[518] Many others told the Committee that knowledge translation is not done well in mental health and addiction research.

The Committee believes that knowledge translation is vitally important to ensure that people living with mental illness or addiction have access to the most effective treatments identified by research. Therefore, the Committee recommends:

 

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That the Canadian Institutes of Health Research (CIHR), through the Institute of Neurosciences, Mental Health and Addiction, substantially increase its efforts in knowledge translation in relation to mental health, mental illness and addiction research. That CIHR work closely with the proposed Knowledge Exchange Centre in order to facilitate knowledge exchange among decision-makers, providers and consumer groups.

 

11.5      A NATIONAL RESEARCH AGENDA

Mental health and mental illness are critical and we should have a national type of agenda… — Rémi Quirion[519]

The Committee has found that in the area of mental health, mental illness and addiction there is no coherent policy or strategy in place to produce a coherent and coordinated response to the complex issues involved.  Usually, mental disorders constitute complex and chronic illnesses with a broad impact on society. Their determinants cut across many sectors, and their management involves many different health professionals. 

Witnesses stressed the need for better coordination of efforts currently being undertaken by the federal and provincial governments, together with non-governmental organizations and the pharmaceutical industry, to deal with the many challenges posed by mental illness and addiction.  In their paper for the Committee, Dr. Kapur and Dr. Vaccarino stated:

 

(…) the issues of mental illness and addictions defy simple solutions. These illnesses have multiple determinants — biological, psychological and social, and adequate responses to them require coordination of multiple sectors. At present, research in these areas is a well-intentioned but uncoordinated effort. We strongly call for the development of a national policy or guiding framework to form the bases for a coordinated effort in the areas of Mental Health and Addictions Research.[520]

Witnesses who addressed issues related to research in the mental health and addiction field agreed on the need for a national research agenda.  In their view, such an agenda should build on current Canadian expertise, coordinate the currently fragmented research activities performed by a variety of bodies (governments, non-governmental organizations, pharmaceutical corporations) and ensure a balance among biomedical, clinical, health services and population health research applied to mental health, mental illness and addiction. 

Importantly, many witnesses stressed that now is the time to address the critical issues in mental health and addiction research.  In particular, Dr. Quirion stated:

The time is now. There is a great deal of expertise in Canada because of the national health care system. That allows us to collect data and to have data banks that are much more impressive than in the United States. Take the new genome research, for example. I think we could have a major impact and we should not be afraid to forge ahead. If we forge ahead with the expertise we currently have, we will succeed in finding the causes of brain diseases and of mental illnesses.[521]

The Committee believes that greater coordination of research activities would benefit people living with mental illness or addiction. It is especially important that research is aligned with their needs. Given CIHR’s leadership role in funding health research in Canada, the Committee recommends:

 

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That the Canadian Institutes of Health Research, through the Institute of Neurosciences, Mental Health and Addiction, work closely with the Canadian Mental Health Commission (see Chapter 16), researchers, provincial and non-governmental research funding agencies, and organizations representing people living with mental illness or addictions in order to develop a national research agenda on mental health, illness and addiction.

 

11.6      SURVEILLANCE

Surveillance is necessary to find out the extent of the problem. Discussions the Autism Society Canada has had with the Canadian Institute of Health Information, Statistics Canada and Health Canada have been frustrating. There is acknowledgement that Health Canada has the mandate to deal with surveillance but there is not the political will to actually carry it out. I strongly urge the committee to press Health Canada to act according to their mandate and carry out surveillance for all mental health and brain-based disorders. It is a concern that the only activity on this front at the moment is a pilot project that will use data collections that already exist, rather than building a system that will allow the collection of the data that is needed. . . . We need the federal Department of Health to take responsibility for surveillance issues, which will facilitate better decision making. —Lisa Simmermon, Public Relations Director, Saskatchewan Families for Effective Autism Treatment[522]

Canada currently has no national picture of the status of mental health across the country. That is, we lack a national information base on the prevalence of mental illness and addiction in all their diverse forms. We also lack the information system required to measure the mental health status of Canadians and to evaluate policies, programs and services in the fields of mental health, mental illness and addiction. This is a major roadblock to determining the level of mental health services and addiction treatments needed by the provinces/territories and the country as a whole, and to evaluate the quantity and quality of services currently provided.

Collecting quality data will provide better information for policy and decision makers inside and outside of government, as well as service providers and consumer groups. A surveillance system will provide measures that provinces could use to set targets on the way to reaching desired health goals and program outcomes.

Two witnesses told the Committee about the importance of a surveillance system. Dr. Wade Junek of the IWK Health Centre emphasized the need to have better measurement and information systems:

If the fundamental goal is to improve the mental health status, or maintain even what we have, for our children and youth, one, we have to measure that status to determine if the actions are having an effect.  We have to have outcomes and measures.  Two, we have to incorporate information about those measurements into our decisions to allow for corrective action.[523]

Doug Crossman, Manager of Mental Health Services at the South Shore District Health Authority in Nova Scotia, told the Committee that it is important to have an outcome orientation.

We need better information systems and better population surveillance systems to monitor what we do and offer outcomes orientation.  Frequently, we do not talk about outcomes.  We talk about service utilization, which means the demand has grown on our service and so we need more money next year for more services.  We should focus on what we are doing to improve the overall health of the population as opposed to expanding the service industry.[524]

Ongoing data on mental health and addiction issues are being collected by federal agencies. For example:

 

 

 

 

§         The Canadian Institute for Health Information (CIHI) collects information on hospitalizations in acute care hospitals and psychiatric facilities.

§         Statistics Canada collects information on mortality, including statistics on suicide.

§         The National Population Health Survey includes questions on alcohol addiction, stress, social support, a distress scale, and a depression scale.

§         The National Longitudinal Survey of Children and Youth includes questions on mental health and mental illnesses for a cohort of children across Canada.[525]

While some of the data could serve as the foundation of a surveillance system, each of the relevant data sources has limitations.  Another serious drawback is their narrow focus — they do not provide a comprehensive perspective on mental health and addiction in Canada. ­

In 2002, the Canadian Community Health Survey carried out by Statistics Canada provided, for the first time, prevalence rates for some mental illnesses, substance abuse disorders, suicidal ideation, and pathological gambling. However, Canada does not currently collect data on an ongoing basis on the prevalence of mental illness and addiction among Aboriginal peoples, homeless people and the prison population — groups that are at higher risk for mental disorders than the general population. Also, hospitalization and mortality data exclude the majority of people living out-of-hospital and being treated for their mental illness or addiction.

The Canadian Alliance on Mental Illness and Mental Health has been advocating the establishment of a national surveillance system that could be used in planning, implementing and evaluating policies, services and programs. The Public Health Agency of Canada has recently identified mental health and mental illness as a priority area and has decided to enhance the surveillance of mental illness through the development of a national mental illness surveillance program. It will spend $400,000 over the next two years on a consultation process and on a select number of feasibility and demonstration projects. It aims to have a proposal for a national mental illness surveillance system by March 2007.[526]

The Committee supports the initial actions taken by the Public Health Agency. However, a lot of work will need to be done to provide a complete picture of the state of mental health in Canada. The Committee is deeply concerned that the anticipated scope and pace of the proposed project may not be sufficient. Therefore, the Committee recommends:

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That the Public Health Agency continue its efforts to develop in a timely way a comprehensive national mental illness surveillance system that incorporates appropriate privacy provisions. That the Public Health Agency expand the range of data collected in cooperation with other agencies, such as the Canadian Institute for Health Information and Statistics Canada, as well as other levels of government and organizations that collect relevant data. That, as it develops a comprehensive national mental health surveillance system, the Public Health Agency work with the Canadian Mental Health Commission (see Chapter 16).

 

11.7      RESEARCH ON HUMAN SUBJECTS

The Committee strongly supports research into mental illness and addiction because it can lay the foundation for future advances in treatment and prevention.  However, research involving people poses many risks: abuse, misuse, exploitation, breaches of privacy, confidentiality, etc. Research involving human participants must be designed and performed in accordance with the highest scientific and ethical standards, and must protect the dignity of individuals and their families who make this valuable contribution to scientific progress.

The Committee acknowledges that individuals living with mental illness and addiction are particularly vulnerable research subjects. While all subjects of clinical research are vulnerable to some degree, the vulnerability of individuals participating in clinical mental illness/addiction research warrants particular attention. It is of paramount importance to protect the rights and well-being of these research participants and to promote ethically responsible research. 

Research advances should not be pursued at the expense of human rights and human dignity.  But nor should protections be so stringent so as to potentially exclude this vulnerable population from vitally important research that can improve scientific knowledge about their conditions and even benefit them as individuals.

In order to ensure the ethical conduct of research involving human subjects, institutions receiving research funding from the three federal granting agencies — the Canadian Institutes of Health Research (CIHR), the Natural Sciences and Engineering Research Council (NSERC) and the Social Sciences and Humanities Research Council (SSHRC) —are required to adhere to the 1998 Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans (TCPS). The TCPS specifies that research proposals should be reviewed by a Research Ethics Board which is charged with protecting the safety, privacy, and dignity of research subjects. Risks to the physical or mental well-being of participants are to be minimized; such risks must be balanced by benefits to the participants or society as a whole.[527]

An important part of the TCPS is that research involving humans may be undertaken only if the subjects give free and informed consent to their participation in the research.[528] Given that most individuals with mental illness function reasonably well, they will be able freely and competently to give or withhold their consent for participation in research. In some circumstances, however, the cognitive capacity of people living with mental illness can be impaired, adversely affecting their decision-making ability.

The TCPS emphasizes the importance of voluntary consent and has provisions for individuals who may not be legally competent to give consent. However, the mental capacity of people living with mental illness to make decisions can exist at different levels to varying degrees and can fluctuate over time. In law, there are no degrees of capacity or incapacity. In its brief to the Committee, the Canadian Catholic Bioethics Institute explained:

The legal system tends to distinguish sharply between those who are deemed “capable” of decision-making regarding their health care and those who are incapable.  Many persons with an active mental illness, such as severe depression or schizophrenia, may not meet the legal criteria for being declared “incapable”, and yet they do have significant impairment of their ability to understand their condition, appreciate their options, make prudent decisions about their mental health care and follow through on these decisions.[529]

The capacity to give consent is an essential condition for research involving human subjects. But the clinical assessment of mental capacity of people living with mental illness or addiction is a highly complex matter, and applicable clinical tests to assess competence are controversial. Illness may affect the ability to properly comprehend and assess the risks and benefits of participation in the research, or the steps required to implement the research plan. Also, given their vulnerability, people living with mental illness may feel coerced into participating.

The Committee understands that sometimes research into mental illness and addiction can be carried out only on people who have an illness that impairs their ability to give consent. However, the Committee is concerned that currently the guidance for research involving human subjects considers only the dichotomy of consent freely given or those who are not legally competent to give consent.

The unique circumstances and vulnerabilities attending mental illness and addiction merit close attention to the ethical design, review and conduct of research. One possibility is for people living with mental illness to have an advocate to assist them with the processes involved in research participation.

The Canadian Institutes of Health Research has undertaken studies into research ethics, including the secondary use of personal information in health research and the appropriate use of placebos in clinical trials.[530] However, the Committee feels that more study is required to develop better safeguards and special protections for the ethical treatment of people with mental illness and addiction as subjects in research. The Interagency Advisory Panel on Research Ethics, composed of experts from the three federal granting bodies is responsible for overseeing the development and evolution of the TCPS. Consequently, the Committee recommends:

 

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That the Interagency Advisory Panel on Research Ethics conduct a study involving broad consultations as to whether the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans provides adequate protections and sufficient guidance for research involving persons living with mental illness and addiction. The panel should also explore the possibility of using patient advocates for persons with mental illness participating in research.

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