HESA Committee Report
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Ms. Joy Smith Dear Ms. Smith: Pursuant to Standing Order 109 of the House of Commons, I am pleased to respond on behalf of the Government of Canada to the Tenth Report of the Standing Committee on Health (HESA), titled Focussing on the Brain: An Examination of Neurological Diseases in Canada, tabled in the House of Commons on June 20, 2012. I would like to take this opportunity to thank the Standing Committee for examining in-depth the issue of neurological diseases in Canada. The Government of Canada recognizes the need to address the burden of neurological diseases on the Canadian population and its economy. In supporting all jurisdictions in determining how to best approach neurological conditions, the Government of Canada has provided significant support, consistent with the federal role, for research and knowledge development to fill gaps and build the evidence base for these conditions. The following information outlines the significant contributions the Government of Canada is making with regard to the Committee’s recommendations, and is organized along three themes: shifting focus towards the brain; promoting neurological research and surveillance in Canada; and improving the quality of life of those with neurological diseases and their caregivers. For ease of reference, the full text of the Committee’s recommendations may be found in an Appendix to the letter. Shifting focus towards the brain – Recommendations 1, 2 The first two recommendations in the Committee Report broadly apply to the Government of Canada and focus on efforts to support action on neurological diseases across Canada by all jurisdictions. In order to make informed decisions on how best to address neurological diseases and their impact on Canadians, good information is needed. Consistent with the federal role, the Government is working to build the evidence base for the benefit of jurisdictions across Canada. Launched in 2009 in collaboration with major neurological charities, the National Population Health Study of Neurological Conditions (NPHSNC) is a $15 million four-year study to fill gaps in knowledge about rates of neurological conditions in Canada and their effects on individuals, families, and caregivers. Composed of a suite of separate studies, the results of the NPHSNC, expected in March 2014, will provide evidence to inform future decisions on neurological disease programs, service delivery and policy development. The Government provides substantial support to brain disease research, including multidisciplinary research that looks at commonalities in brain diseases. In Budget 2011, the Government committed $100 million (to be matched by non-federal sources) to establish the Canada Brain Research Fund in partnership with Brain Canada. Brain Canada’s research program is grounded in an innovative approach that looks at the brain as a single system and seeks common aspects across what were previously thought of as unrelated diseases. The Canada Brain Research Fund will support the Brain Canada Foundation’s efforts to bring together teams of scientists specializing in different disciplines to identify common mechanisms for repair, restructuring, remodeling and recovery of brain functions. It will also enable this knowledge to be utilized in brain repair and recovery techniques that can apply to a range of diseases and disorders of the brain and nervous system. In addition, since 2010, CIHR has invested $255 million in cross-cutting, interdisciplinary research in the field of neurosciences. This includes $7.5 million towards the International Collaborative Research Strategy on Alzheimer’s Disease, a multidisciplinary initiative that will help Canadian researchers engage in large scale international Alzheimer's research and facilitate Canadians’ access to the latest preventive, diagnostic and treatment approaches to Alzheimer's disease and related dementias. To better understand the genetic prevalence and signatures of diseases, CIHR has also recently launched, in partnership with Genome Canada, a large scale Personalized Medicine Signature Initiative that will help develop new diagnostic and therapeutic approaches for a variety of disorders, including neurodegenerative diseases. This initiative represents a federal investment of $67.5 million, to be matched one to one by private and provincial partners for a total investment of $135 million. The goal of this multidisciplinary research is to engage biomedical, clinical, population health, health economics, ethics and policy researchers, as well as provincial and territorial health authorities, in an undertaking to identify aspects of diagnosis and treatment of disease that are suitable for a personalized medicine approach. Promoting neurological research and surveillance in Canada – Recommendations 3, 4, 5, 6, 7, 8, 9 Seven recommendations in the Committee Report focus on specific actions to promote and facilitate neurological research and surveillance and communicate results. Surveillance The Public Health Agency of Canada is working to increase the capacity of its surveillance systems to better monitor neurological diseases in Canada including expanding autism surveillance efforts. Working with a broad range of stakeholders, the Public Health Agency of Canada (the Agency) is developing a new national surveillance system on developmental disorders. This initiative will initially focus on Autism Spectrum Disorders (ASD) and will also be designed to include a broader range of neurodevelopmental disorders over time. This surveillance system will allow us to reliably estimate the national incidence and prevalence of ASD and other developmental disorders and allow tracking of these rates and other relevant indicators over time. It will provide ongoing information on characteristics of those who develop these disorders, the risk factors, and the services and treatments they receive as well as provide evidence to support programs, professional practice, service delivery, and policy development. In addition, through the National Population Health Study of Neurological Conditions a series of projects have been established with several provinces (BC, AB, ON) to assess the validity and feasibility of adding neurological conditions to current surveillance activities, including the Canadian Chronic Disease Surveillance System, which is a collaborative network of provincial and territorial (P/T) surveillance systems supported by the Agency. It uses P/T health administrative databases including physician billing, hospitalization and resident registry databases to track chronic diseases such as diabetes, hypertension and heart disease. Research CIHR continues to develop important strategic funding opportunities to advance neurological research in Canada with the goal of improving the health of Canadians. Between 2005-2006 and 2010-2011, CIHR has made significant research investments in order to better understand neurological conditions, including investments of $15.4 million in research related to Amyotrophic Lateral Sclerosis (ALS), $139.9 million related to Alzheimer’s Disease, $26.2 million related to Autism Spectrum Disorders (ASD), $32.9 million related to Multiple Sclerosis (MS), and $59.6 million for research related to Parkinson’s Disease (PD). Furthermore, CIHR has invested approximately $590 million since 2005-2006 in medical imaging research, which contributes to the early diagnosis and treatment of neurological diseases. Other key initiatives that will contribute to reducing the burden of neurological diseases include the Canadian Longitudinal Study on Aging, which will follow 50,000 Canadian men and women between the ages of 45 and 85 for a period of at least 20 years, and provide valuable information on various neurological diseases, as well as transitions, trajectories, and profiles of healthy aging; the Canadian Dementia Knowledge Translation Network, which will increase patient and caregiver access to information about dementia and increase the uptake and application of research findings to dementia care; the Personalized Medicine Signature Initiative, which is working towards research for the effective prevention, diagnosis, and treatment of disease; the International Collaborative Research Strategy for Alzheimer’s Disease; and CIHR’s Strategy for Patient-Oriented Research, which aims to accelerate the translation of research results into improved health outcomes by linking researchers and coordinating research along thematic lines. CIHR recognizes that its current research funding programs and review models need to be streamlined to reduce program complexity, and ensure that researchers spend less time writing and applying for multiple grants to support their research. As such, CIHR has initiated a process that will facilitate the sustainability of funding programs, and remove barriers to improve access to all researchers. This will include developing a new streamlined peer review process and providing longer-term support to established investigators with demonstrated track records of success. In addition, through the Networks of Centres of Excellence program, the Government of Canada supports several national, multidisciplinary research and commercialization networks such as NeuroDevNet, the Canadian Stroke Network, and PrioNet that aim to advance knowledge related to neurological diseases. NeuroDevNet focuses on studying children’s brain development from basic and clinical perspectives, seeking to understand the causes of neurological deficits, train new researchers, and translate new knowledge into improved measurement, diagnosis, prevention, and treatment of neurodevelopmental disorders. The Canadian Stroke Network seeks to reduce the impact of stroke on Canadians by collaborating to create new knowledge on stroke prevention, treatment and rehabilitation. The PrioNet Network has completed work over seven years that has led to the development of knowledge and expertise in the area of abnormal brain proteins that can be mobilized in the attack against Alzheimer’s disease and related dementias. In addition to these networks, CIHR's Institute of Neurosciences, Mental Health and Addiction similarly supports research and works with partners to set research priorities, coordinate action, and accelerate knowledge translation towards improved health for those affected by neurological diseases. Communicating results CIHR will continue to update the House of Commons Standing Committee on Health regarding the findings of its Scientific Expert Working Group (SEWG) regarding Multiple Sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI), the results of the MS clinical trial, and its patient-oriented research strategy. On April 18, 2012, the Government announced that a team of researchers was selected to undertake an interventional Phase I/II clinical trial for CCSVI in persons with MS. In addition, because of the need for more information on MS in Canada, the GoC announced, in March 2011 the development of the Canadian MS Monitoring System, which will measure and monitor the evolution and treatment of MS in Canada, including the CCSVI procedure. The Canadian Institute for Health Information has completed development of the System and pilot tests will proceed in several clinics over the fall. CIHR will also continue to post regular updates on its website concerning CIHR initiatives related to the MS/CCSVI issue. These updates will include links to the CIHR-funded systematic literature review on the evidence regarding CCSVI, and highlights of the SEWG’s meetings. CIHR is working to improve health outcomes for Canadians and contribute to improving access to clinical trial research in Canada through the Strategy for Patient-Oriented Research (SPOR), which is built on the principle that there is a growing need to conduct intervention studies in order to address important clinical issues and comparative evaluation research to determine what works in clinical settings. Implementation of SPOR is guided by a national Steering Committee which includes representatives from provincial and territorial governments, health system decision-makers, health professionals, industry leaders, and patients. The Steering Committee has determined that patient engagement in governance, priority-setting and decision-making processes is to be a defining feature of the developing SPOR Networks. Multiple consultations were conducted in the development of SPOR, including federal and provincial health research funders, health charities, researchers, professional associations, healthcare organizations, life sciences industries, and government departments. CIHR values transparency, and SPOR activities are posted on the CIHR website. Updates to HESA on SPOR activities will be provided on request. Improving the quality of life of those with neurological diseases and their caregivers – Recommendations 10, 11, 12 The final three recommendations of the Committee Report focus on the sharing of information and best practices, including better informing Canadians about neurological diseases and the protection of their personal health information. Protection of Information The Government of Canada acknowledges concerns expressed to the Committee regarding potential discrimination on the basis of genetics in the area of employment and health insurance. While the collection of genetic information is not a widespread practice by employers or insurers, it is a concern as privacy protections can be set aside with the informed consent of the individual to whom the personal information relates. Governments are aware of these concerns, including provincial and territorial governments that have jurisdiction over most employers and all insurance companies. Federally, the Privacy Act is in place to protect the privacy of individuals with respect to personal information about themselves held by government institutions, which could include identifiable genetic information. The federal Personal Information Protection and Electronic Documents Act (PIPEDA) could also be applied to protect genetic information collected by private sector employers and insurers. PIPEDA has a requirement for parliamentary review every five years and the privacy of genetic information will likely be a topic of a future review. The Canadian Charter of Rights and Freedoms, which applies to the federal, provincial and territorial governments, also protects information in which there is a reasonable expectation of privacy, such as health and medical information. Informing Canadians and Sharing Best Practices The Public Health Agency of Canada’s priorities related to neurological diseases and neurodevelopmental disorders focus on enhancing health surveillance to better understand the diseases and fill knowledge gaps that are referenced in the HESA report. An essential component of the pan-Canadian research projects under the National Population Health Study of Neurological Conditions (NPHSNC) is to inform Canadians of the extent of neurological diseases in our country and their impacts. A unique partnership between Neurological Health Charities Canada and the federal health portfolio will benefit Canadians living with neurological conditions and their caregivers. The study findings and information related to the NPHSNC will be distributed in collaboration with our partners. As the new surveillance system on ASD and other developmental disorders is implemented and accumulates data for analysis, the Agency will develop a full suite of information products that meet the needs of diverse audiences including the general public, those living with developmental disorders and their families, professionals and paraprofessionals, and, policy and decision makers. Working with the provinces and territories, the Agency is currently collecting information on standards for diagnosis of Autism Spectrum Disorders (ASD) across all 13 jurisdictions. This will support professional associations and provinces and territories in identifying and disseminating current best practices for diagnosis of ASDs in Canada. The Agency is collaborating with the Canadian Association of Paediatric Health Centres, a national professional association, to develop a data set that will support evaluation of methods of diagnosis and treatment so that institutions can learn from each other. The Government of Canada’s research investments put a priority on translating knowledge into improved health. Specifically, CIHR’s Institute of Neurosciences, Mental Health and Addiction is working with partners in the autism community to set research priorities and accelerate the speed at which new knowledge is used to improve the health of those affected by autism. This Institute has invested more than $26 million in ASD-related research since 2005-2006, including approximately $5.6 million in 2010-2011 alone. On March 27, 2012, the Government announced funding through CIHR for the Chair in Autism Spectrum Disorders (ASD) Treatment and Care Research Program, which will support an investigator to bring innovative approaches to the treatment and/or care of ASD. The Chair will support research, training, mentoring and knowledge translation activities. In addition to these initiatives, since 2009, the Government has recognized April 2 as World Autism Awareness Day in Canada, and supports events such as Autism Awareness Month in October of each year. Conclusion Consistent with the federal role, in the area of neurological diseases, the Government of Canada has provided significant support for research and knowledge development to fill gaps and build the evidence base to support all jurisdictions in determining how to best approach these conditions. I trust this letter demonstrates the level of commitment and scope that the Government of Canada has towards addressing neurological diseases and ensuring that Canadians are supported in leading healthy lives. Sincerely, Leona Aglukkaq Appendix Committee’s Recommendations
PHAC work with stakeholders, experts and provincial and territorial representatives to identify and promote best practices related to Autism Spectrum Disorders. |