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May 4 – National Steering Committee
SPOR Update is a report on the latest news and developments regarding Canada’s Strategy for Patient-Oriented Research.
Tremendous progress has been made across Canada to implement the SPOR SUPPORT Units. SUPPORT Units have been established in British Columbia, Alberta, Manitoba, Ontario, Quebec, the Maritimes and Newfoundland and Labrador. Business plans from Saskatchewan and the Northwest Territories have been approved and agreements are being finalized.
As part of the implementation of SUPPORT Units, each is undertaking projects that will demonstrate their functionality. A number of these "demo projects" have been completed or are well underway and have had positive impacts. Following are just a few examples of the great work being done through the SUPPORT Units.
The Knowledge Translation platform of the Manitoba SPOR SUPPORT Unit was involved in a parent-led project centering on a social media campaign, 'Shit Happens', to improve resources and care for children affected by Hirschrsprung's Disease (HD). Patients and their families are engaging directly in this parent-led project through social media to help inform research priorities.
A data and analytics platform has been created specifically for the purpose of supporting patient-oriented research (POR) in Ontario (and across Canada). The platform has been developed by one of the Ontario SPOR SUPPORT Unit Centres - the Institute for Clinical Evaluative Sciences (ICES). ICES data is globally unique in scope and breadth and covers individual and population data that is linkable and de-identified.
The ICES new Data and Analytics Services (DAS) is the first time that this extensive data-set has been made available for analysis outside of ICES itself, providing high quality data that is accessible to all researchers in POR with a dedicated analyst and project manager for data requests, for just the cost of data collection and analysis.
A recent report by the Maritime SPOR SUPPORT Unit, Small Area Variation in Rates of High-Cost Health Care Use Across Nova Scotia, used administrative data and advanced statistical modelling. Engaging patients in this type of research can be challenging, but they found an effective way to do so. They engaged 12 cancer care navigators, diabetes educators and volunteer wellness program coordinators. The latter group included patients with chronic disease who are trained to support other patients with chronic disease management. Drawing on their own health care experiences, and those of other patients they know well, this group provided insights into what variables to look at, helped the team understand the context of their results, and generated hypotheses for future work.
More information about this project can be found in the full report published on February 2, 2016.
Contact information for all of the SPOR SUPPORT Units can be found on the CIHR website.
SUPPORT Unit Council
The SUPPORT Unit Council met in Winnipeg, MB on November 5-6, 2015 in conjunction with the Grand Opening event of the George and Fay Yee Centre for Healthcare Innovation (CHI), the SUPPORT Unit in Manitoba. Among their topics of discussion was how to facilitate collaboration and linkages amongst the SUPPORT Units across their jurisdictions and how connections can be established with the SPOR Pan-Canadian Networks. The meeting also featured presentations from Dr. Parminder Raina, Lead Principal Investigator of the Canadian Longitudinal Study on Aging (CLSA); Dr. Jeremy Grimshaw, Director of Cochrane Canada; and Dr. Ivy Bourgeault, co-lead of the Canadian Health Human Resources Network (CHHRN). The presentations highlighted areas of potential collaboration and synergy between the SUPPORT Units and these complementary initiatives.
Pan-Canadian Network in Primary and Integrated Health Care Innovations
The Primary and Integrated Health Care Innovations Network is being rolled out in three phases; we are currently in Phase III. Phase I included the creation and seed funding of the jurisdictional networks. Phase II focused on the development of the pan-Canadian Network (by providing Management and Operations grants to allow the member (jurisdictional) networks to become official members of the pan-Canadian Network); as well as a funding opportunity for 'Quick Strike' research projects, which are intended to show the potential of the Network to address questions of relevance to multiple provinces and territories in a one-year timeframe.
Phase III will see the creation of the National Coordinating Office (NCO) for the Network, which is an integral part of the Network's governance and operations. A funding opportunity for the NCO was launched in December 2015 with an application deadline of April 4, 2016. Also part of Phase III, a second round of 'Quick Strike' research projects were funded: six research projects were approved to conduct rapid turn-around, time-sensitive, cross-jurisdictional research studies that align with the pan-Canadian Networks Quick Strike research priorities.
The SPOR PIHCI Network - Knowledge Synthesis Grants funding opportunity is now open for applications. Deadline for submissions is July 26, 2016.
Chronic Disease Networks
CIHR and partners have approved the funding of five SPOR Networks in Chronic Disease. The primary objective of these pan-Canadian Networks is to translate existing and new knowledge generated by health research into testing of innovations that can improve clinical science and practice and foster policy changes, leading to transformative and measureable improvements in patient health outcomes, and in efficiency and effectiveness in healthcare delivery within five years.
Each Network will receive funding of $12.45 million from CIHR, for a total investment from the Government of Canada of $62.25 million over five years. An additional $126 million will be contributed by partners, including universities, hospitals, industry, health charities and provincial agencies.
The Honourable Jane Philpott, Minister of Health, officially announced this major investment in health research at an event held at McMaster University on March 31, 2016. More information can be found in the official press release.
SPOR Capacity Development Framework
CIHR is engaging with patients and other stakeholders regarding a set of Core Competencies for Patient-Oriented Research. These competencies were developed by the SPOR SUPPORT Unit Council Capacity Development Working Group based on the original Capacities for Multiple Stakeholders for Patient-Oriented Research developed by the Ontario SPOR SUPPORT Unit Working Group on Training and Capacity Building. They are considered essential for the successful conduct of patient-oriented research and are common across all stakeholders in the patient-oriented research enterprise, including patients, health care professionals, decision-makers, policy-makers, researchers, and trainees. The final competencies will be appended to the SPOR Capacity Development Framework, which is collectively adopted by all SPOR partners and SPOR-funded entities as a guide for capacity-building action plans and activities.
CIHR is conducting an environmental scan with the goal of identifying the efforts being made across Canada and internationally to increase capacity for patient-oriented research. The findings of this scan will be used to inform CIHR's strategy for developing capacity in the area of patient-oriented research.
The purpose of the Patient Engagement Collaboration Grants funding opportunity is to support researchers and knowledge users to develop collaborations with patients and other stakeholders throughout the research process. Through two launches of the funding opportunity, CIHR and partners have supported 31 grants. Information on the approved projects is available on the CIHR website: spring 2015 competition and winter 2015 competition. The Collaboration Grants funding opportunity will be launched for a third time in spring 2016.
Patient Engagement Resources: The Foundational Curriculum for Patient-Oriented Research
The Foundational Curriculum for Patient-Oriented Research will be an open-access resource designed to equip interested learners, including patients, researchers, health care professionals and other stakeholders, with the basic skills and knowledge to engage meaningfully in patient-oriented research. The Curriculum will follow a co-learning model where all stakeholders can learn together and will be in a modular format.
The concept and scope of the Curriculum was derived from a consensus-building workshop in March 2015, which brought together a group of patients, researchers, clinicians, and other citizen and patient engagement experts to co-design and develop the Curriculum's key elements, including its learning objectives. The development of the content is currently being co-lead by a group of patients, researchers and education specialists across the country. During spring and summer 2016, the draft content will be finalized and prepared for piloting activities.
SPOR National Steering Committee
The SPOR National Steering Committee met in Ottawa on November 26, 2015 to discuss the recent progress on the elements of SPOR. The Committee provided feedback to guide the next steps for a number of ongoing plans and activities, including oversight for the SPOR SUPPORT Units following the review of their annual reports and the SPOR Evaluation process. The committee also heard presentations from Dr. Jacqueline Quail, Senior Researcher, Saskatchewan Health Quality Council, and Dr. Walter Wodchis, Associate Professor, Institute of Health Policy, Management and Evaluation, University of Toronto, on their funded Primary and Integrated Health Care Innovations Network Quick Strike Project - HOTSPOTTING: Identifying superusers of health care services with mental health and addiction problems; and Dr. Adrian Levy, Principal Investigator of the Maritime SPOR SUPPORT Unit on the successes and challenges in the implementation of the Unit to date.
The next meeting of the National Steering Committee is scheduled for May 4, 2016.
SPOR: Bringing real change to health care
SPOR recognizes that the knowledge acquired by a patient living with a particular disease or condition can be as valuable as the scientific knowledge acquired by clinicians and researchers through their work and training. As someone with experience in both roles, Ms. Béatrice Débarges is leading an engaging dual narrative as she shares her personal experience as both a clinician and patient who is living with the chronic condition fibromyalgia. Dr. Antoine Boivin was struck by the gap between the research community's goals and objectives and the day-to-day, practical needs of patients. Seeing an opportunity for improvement, he decided to get involved, convinced that he could make a difference. Listen to the podcasts.
CIHR Gold Leaf Prizes
CIHR is proud to announce its new suite of prizes, the CIHR Gold Leaf Prizes, which are among the highest honours that can be bestowed on an individual or team for excellence in health research and its translation into benefits for Canadians. Each CIHR Gold Leaf Prize has a value of $100,000. These prizes cover achievements across all pillars of research (biomedical, clinical, health services and policy, and population and public health) and will be awarded every two years to a researcher in each of the following categories: Impact, Discovery, Outstanding Achievements by an Early Career Investigator and Transformation. Nominations close September 6, 2016.
CIHR's Gold Leaf Prize for Transformation recognizes that transformation is an essential element to building a strong Canadian health research enterprise. It is expected that the focus area of this prize will change year over year; for 2016, the focus is on Patient Engagement. CIHR is looking for examples of extraordinary leadership within research that demonstrates an unwavering commitment to realizing collaborations with patients in order to advance patient priorities and patient-important outcomes, ultimately leading to improved health outcomes and an enhanced health care system.
Relevant Conferences and Workshops
SPOR will be featured at the Canadian Association for Health Services and Policy Research (CAHSPR) annual conference. This year's conference, with the theme A Learning Healthcare System: Let the Patient Revolution Begin!, will take place May 9-12, 2016 in Toronto, ON.
The Career Development in Methods and Health Services Research platform of the Alberta SPOR SUPPORT Unit is hosting a Patient-Oriented Research Summer Institute in Calgary, AB on May 2-4, 2016. Visit the conference website for more details.
Alberta Innovates – Health Solutions (AIHS) will be hosting the second provincial "hands-on" training course on how to put Health Research Impact Assessments into practice. The course will take place in Banff from June 12-15, 2016. More information can be found on the event website.
Canadian Clinical Trials Coordinating Centre (CCTCC) is organizing a dynamic panel titled "Clinical Trials - The Canadian Advantage" at BIO 2016 in San Francisco, CA on June 7, 2016 from 2:00pm-3:30pm. Discussion will highlight the key strengths of the Canadian environment, recent operational efficiencies and feedback on improvements. Panel attendees will include representatives from pharmaceutical and biotechnology companies, global contract research organization (CRO) and government.
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