BC SUPPORT Unit Overview. July 23, 2015

Transcription

1 BC SUPPORT Unit Overview July 23, 2015

2 Presentation goals Review the basics of CIHR s Strategy for Patient-Oriented Research (SPOR) and planning for a BC SPOR SUPPORT Unit Update you on start-up progress of the Unit Hear from you about what you think the critical success factors are for the Unit Hear from you about how you could get involved with the Unit 2

3 Patient-oriented research As defined by the Canadian Institutes of Health Research (CIHR): Engages patients as partners, focuses on patient-identified priorities, and improves patient outcomes Conducted by multidisciplinary teams in partnership with stakeholders Aims to apply knowledge generated to improve healthcare systems and practices 3

4 Our use of the term patient Defined as anyone who has personal experience with a health issue and their informal caregivers, including family and friends Under this definition, every member of the public is considered to be a patient at one time or another 4

5 Patient engagement CIHR definition: Meaningful and active collaboration in governance, priority setting, conducting research and/or knowledge translation. Depending on the context, patient-oriented research may also engage people who bring the collective voice of specific, affected communities. 5

6 Patient engagement beliefs underpinning SPOR When patients provide input on identifying health research priorities and participate in the design and undertaking of research projects When research is conducted in areas patients value When researchers understand the value of patient engagement and patients understand the value of research 6

7 Patients will influence decision-making and accelerate the uptake of new practices. Ultimately leading to improved patient experience, improved health outcomes, and a more sustainable health care system (The Triple Aim) 7

8 Are Canadians and British Columbians interested? Canada Speaks 2015 public opinion poll Poll question: How interested are you in participating in health & medical research, including helping to determine priority topics and deciding on future areas of funding? 8

9 Awareness of opportunities Canada Speaks 2015 public opinion poll National results British Columbia Poll question: Are you aware of current opportunities that exist for patients and the public to participate in health & medical research including helping to determine priority topics and deciding on future areas of funding? 9

10 Canadian Institutes for Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR), 2011 Support for People and Patient-Oriented Research and Trials (SUPPORT) Units SPOR Networks Training and capacity development Improving the clinical trials environment Patient engagement 10

11 11 licensed under creative commons

12 Support for People and Patient-Oriented Research and Trials (SUPPORT) Units SPOR SUPPORT Units and their role: Provincial, multi-partner units that will increase and enhance patient-oriented research. The units will: be locally accessible, multidisciplinary clusters of specialized research resources, policy knowledge, and patient perspective provide necessary expertise lead and facilitate decision-making foster implementation of best practices promote collaboration among researchers Process/Funding: CIHR approval of each unit s business plan Upon approval of the business plan, CIHR to provide matching funds equivalent to within-province contributions 12

13 SUPPORT Units aim to improve current state of several functions of patient-oriented research Patient engagement Real world clinical trials Data platforms and services Health systems, knowledge translation and implementation Career development and training in methods and health services research Consultation and research services Methods support and development 13

14 SPOR Vision Community-Based Primary Healthcare Research Network Mental Health Research Network Yukon Support Unit BC Support Unit AB Support Unit NWT Support Unit SK Support Unit MB Support Unit Nunavut Support Unit ON Support Unit QC Support Unit Newfoundland and Labrador Support Unit Maritimes Support Unit 14

15 Current status of the BC SUPPORT Unit In January, we presented our initial business plan to the Canadian Institutes of Health Research (CIHR). A CIHR international adjudication panel reviewed the plan. In March, CIHR provided start-up funding as well as questions and recommendations from the panel to guide us in revising the plan. Currently, we re revising the business plan and planning for ongoing operations in parallel. We aim to re-submit the business plan by the end of July. 15

16 CIHR questions and recommendations Governance Scientific leadership Patient engagement Data platforms Knowledge translation Budget Full-time lead First Nations Health Authority, multicultural involvement 16

17 17 BC context

18 Goals as outlined in the business plan 1. Create opportunities for patients to engage in patientoriented research 2. Build BC s capacity for patient-oriented research 3. Create opportunities for collaborative inquiry among all stakeholders 4. Increase the usefulness and availability of patient-oriented data 5. Demonstrate the impact of patient-oriented research on health and health care 18

19 BC SUPPORT Unit governance An Interim Governing Council (IGC) is overseeing the start-up of the Unit's development. IGC representation: Patient representatives BC s research-intensive universities BC s five regional health authorities FNHA PHSA PHC BC Government MSFHR 19

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24 Potential data contributors Provincial data platform Ministry of Health health authority EMRs other ministry PopData PopData s data contributions to the platform recognize that these data are held on behalf of data stewards (e.g. other organizations, researchers etc.) Provincial Data Platform PopData Other FNHA potential sources Single entry point for researchers to access crossorganizational data (user-oriented process) Researchers

25 Provincial data platform: Goals Improve timeliness, efficiency and greater breadth in researcher data access Increase use and utility of data by broadening potential users and scope of access Position BC for excellence in data-driven evidence for health and health research sectors Advance best data management practices Increase security and functionality in data capture, storage and retrieval for health research, including real world clinical trials and randomized controlled trials (RCTs) 25

26 Provincial data platform: Functional Outcomes A secure, virtual collection of data drawing from a data steward s single source of truth A shared environment used by multiple types of data users Data remain in the respective source environment and are assembled when needed, for a defined period of time Data assembled and linked with controlled movement of data products out of the platform 26

27 Provincial data platform leadership Ministry will provide leadership on work related to: Ministry of Health data warehouse Implementation and design of provincial data platform BC SUPPORT Unit will provide leadership on work related to: Researcher data storage and clinical trial tools Use of the provincial data platform Access to the data platform will be through PopData, a key partner of the BC SUPPORT Unit. 27

28 BC SUPPORT Unit patient engagement strategy Developing a framework to recruit, train and support all stakeholder groups in patient engagement patients, researchers, health care providers and health system decision makers 28

29 Patient engagement opportunities Governance Committees Priority setting All stages in the conduct of research 29

30 Discussion What are the critical success factors for the Unit? Given the various components of the Unit, in what ways could you be involved? 30

31 Keeping in Touch Comments? Questions? BC SUPPORT Unit Interim Leader, Bev Holmes, or Interim Operations Lead, Heather Harris, More information/sign up for updates: 31

32 32 Thank you!