Canada's Strategy for Patient-Oriented Research (SPOR) Overview and Update - Presentation for the Workshop on Patient-Oriented Research ...
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Canada’s Strategy for Patient- Oriented Research (SPOR) Overview and Update Presentation for the Workshop on Patient-Oriented Research University of Saskatchewan November 13, 2014 Nancy Mason MacLellan Manager, Major Initiatives, CIHR
CANADIAN STRENGTHS Canada Excels In All Health Research Sectors Clinical Medicine More Impact Biology Public Health and Average Relative Citations (ARC) Health Services World Average Biomedical Research Psychology and Cognitive Sciences Less Impact Less Specialized World Average More Specialized Specialization Index (SI) 2 Source: The State of Science and Technology in Canada, 2012
CANADIAN STRENGTHS Strong Intl. Research Collaboration 3 Source: The State of Science and Technology in Canada 2012
SPOR – A SOLUTION The Strategy for Patient-Oriented Research - a coalition of federal, provincial and territorial partners, including patients, researchers, health practitioners, provincial/territorial health authorities, policy makers, academic health centres, charities, and the pharmaceutical sector, working together to generate and translate high quality, relevant research into practice. Patient-oriented research aims to ensure that the right patient receives the right intervention at the right time 5
PRINCIPLES • Patients need to be involved in all aspects of the research to ensure questions and results are relevant and integrated into practice • Decision-makers and clinicians need to be involved throughout the entire research process to ensure integration into policy and practice • Funding under SPOR is based on a 1:1 matching formula with non- federal government partners to ensure relevance and applicability • Effective patient-oriented research requires a multi-disciplinary approach • SPOR is focused on first-in-human (and beyond) research designed to be transformative in nature and improve patient outcomes and/or the effectiveness and efficiency of the health care system • SPOR is outcome driven and incorporates performance measurement and evaluation as integral components of the initiative 6
CORE ELEMENTS Support for People and Patient-Oriented Research and Trials (SUPPORT) Units SPOR Networks Capacity development Improving the clinical trials environment Patient engagement 7
SUPPORT UNITS SPOR SUPPORT Units: provincial/territorial/regional centres providing support and expertise to those engaged in patient-oriented research including a focus on data access, methodological and research services, knowledge translation, clinical trials and capacity development STATUS UPDATE • Alberta, Manitoba, Ontario, Quebec, Data Platforms & Maritimes (PEI, NB, NS), and Services Newfoundland & Labrador are at varying stages of implementation Consultation & • British Columbia to submit in fall 2014 Methods Support Research & Development and Saskatchewan to submit in winter Services 2015 Collective • NWT received seed funding toward Priorities the development of a business plan Health Systems, Career • Dialogue continues with Nunavut and Development in KT & Yukon to develop an appropriate way Methods & HSR Implementation for them to intersect with SPOR • The SPOR SUPPORT Unit Council Real World Clinical has been established to link Trials representatives from across the SUPPORT Units 8
NETWORKS National research collaborations of patients, health professionals, decision makers, health researchers and other stakeholders to generate evidence and innovations designed to improve patient health and health care systems 9
NETWORKS Transformational Research in Adolescent Mental Health: is co-funded by the Graham Boeckh Foundation (GBF). The Network will use TRAM funds, participant resources and leveraged investments in ways most likely to improve the mental health outcomes of 11-25 year olds over the next five years. UPDATE: On June 13, 2014, CIHR and GBF formally announced the launch of ACCESS Canada, the successful TRAM Network in Youth and Adolescent Mental Health, led by Dr. Ashok Malla. Key members span six provinces and one territory. Primary and Integrated Health Care Innovations: includes targeting individuals with complex needs across their life course; showing capacity to evolve the network’s scope over time to include age groups from children to older adults; and proposes multi-sector integration of upstream prevention strategies and care delivery models. UPDATE: Network is being implemented using a phased approach. The 11 member networks are currently working on their applications to become official members of the pan-Canadian Network. Spans all provinces and one territory. Networks in Chronic Disease: CIHR led a consultation to inform decisions of the National Steering Committee regarding the next network opportunities to be launched; the development of an opportunity for networks in chronic disease, through an open competition process was recommended by the National Steering Committee. UPDATE: A multi-phase funding opportunity for SPOR Networks in Chronic Disease was launched in October 2014. 10
DEVELOPING CAPACITY To grow, support and sustain a collaborative, interdisciplinary and innovative patient-oriented research environment capable of addressing evolving health care questions, contributing to enhancing patients’ health care experience and improving health outcomes. 11
CLINICAL TRIALS ENVIRONMENT Through a partnership between CIHR, Canada’s Research-Based Pharmaceutical Companies (Rx&D), and HealthCareCAN , the Canadian Clinical Trials Coordinating Centre (CCTCC) was created to: • Measure, monitor and market clinical trial performance improvements • Leverage existing work on accreditation, harmonization and streamlining ethics reviews and common contracts • Develop a database of patient registries and consider national recruitment strategies • Attract international investment in clinical trials STATUS UPDATE • A 12-member National Advisory Committee has been formed to provide advice to the Executive Committee. • The Canadian Clinical Trial Asset Map (CCTAM) has been developed and will officially be launched in early 2015 • A Model Clinical Trials Agreement has been developed • Work on an accreditation system for Canadian Research Ethics Boards continues • A Working Group on Patient Registries has been formed 12
PATIENT ENGAGEMENT Occurs when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge STATUS UPDATE In response to the SPOR Patient Engagement Framework published in June 2014, the CIHR Citizen and Patient Engagement Implementation Strategy is introducing a number of cross-cutting mechanisms across three core areas: Governance and Capacity Building Tools and Resources Decision-Making Ensuring that citizen and patient Ensuring that resources are available Ensure tools and resources are engagement is embedded in to facilitate the participation of citizens available to citizens and patients to CIHR programs/processes and patients in CIHR help prepare them to effectively programs/processes and POR contribute to/participate in CIHR programs/processes and POR Ex. Patient and Citizen Ex. Funding opportunities for the Participant Pool; mechanism to research community and knowledge Ex. Orientation tool for boards and capture patients and citizens in users to form active collaborations committees; development and roll- the College of Reviewers; an whereby citizens and patients are out of a curriculum to prepare incentives/compensation policy engaged early and often in POR; patients for engagement in to compensate citizens and development of a Citizen and Patient research; development of a ‘jargon patients participating in research Engagement Community of Practice buster’ to explain research terms
KEY BENEFITS • Improved health for Canadians by ensuring that the best research evidence moves into practice, enhancing the health care experience for patients and improving health outcomes for Canadians • Economic benefits by optimizing spending on health care systems, reinvesting resources where the evidence shows that these can have greatest impact, and attracting private investments in evaluative research • Driving innovation in patient-centred care in areas like e-health, implementation science and clinical practice • Linking provinces and territories by providing jurisdictions with opportunities to learn from each other, translating best practices in patient- centred care across Canada, and benefitting all Canadians • Reversing the decline in private sector clinical research by creating an environment that makes it easier to pursue clinical research in Canada 14
DISCUSSION and QUESTIONS?
- Appendix - Networks in Chronic Disease
SPOR Networks in Chronic Disease Definition of Chronic Disease: non-communicable, long-term disease that is not passed from one person to another; it evolves over time, often progressing in severity. Although a non-communicable chronic disease may be prevented and can often be controlled, it is rarely cured. Focus of the Networks: Anchored on the challenges in Valley 1 research as it bridges to Valley 2. First-in-human and beyond research in chronic diseases that have resulted in areas of high disease burden. Networks are strongly encouraged to explore the opportunities for impact across multiple chronic diseases. No more than one network will be funded in any particular focus area. Successful networks are expected to include relevant international collaborations. 17
SPOR Networks in Chronic Disease Phase Major Step Key Points Timeline Important Phase dates: I Registration • Administrative only and will December 2014 be used to facilitate reviewer recruitment Letter of Intent • Reviewed by an international January – panel of experts March 2015 • Top 20 in the fundable range will be provided with a $50K development grant and will be invited to a strengthening workshop Phase II Strengthening • Mandatory for all successful Spring 2015 LOIs Workshop(s) • Workshop to help strengthen applications and encourage dialogue between applicants Phase III Full Application • Full applications submitted October 2015 – and reviewed January 2016 • Four distinct chronic disease networks are funded 18
SPOR Networks in Chronic Disease Funds Available: Each successful network will receive up to $12,500,000 over five years from CIHR. Up to 20 Development Grants will be funded through the Letter of Intent stage. • Each Development Grant will have a maximum value of $50,000. • Partner funds are NOT required at this stage. Up to 4 Networks will be funded through the Full Application stage. • CIHR will provide up to $12.45M over five years per Network. • Funds must be matched 1:1 with non-federal sources of funding. 19
SPOR Networks in Chronic Disease Network Composition: The network must demonstrate that it will be pan-Canadian in scope, i.e., that it includes Principal Applicants (key members), from a minimum of one province or territory in three of the following four regions: East – includes Newfoundland and Labrador, Nova Scotia, Prince Edward Island and New Brunswick Central – includes Quebec, Ontario and Manitoba West – includes Saskatchewan, Alberta and British Columbia North – includes Nunavut, Northwest Territories and Yukon 20
SPOR Networks in Chronic Disease Evaluation Criteria Categories for the LOI: 1. Vision, rationale, priorities and added-value 2. Potential for transformative impact 3. Patient-oriented research program Quality of the proposed research program, including the evidence that sex and gender considerations have and will be taken into consideration. 4. Strength of the team Appropriateness of the role described for the sex/gender champion. 5. Patient-oriented research training and mentoring strategy 6. Knowledge translation plan 7. Partnership plan 8. Governance 21
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