BC SUPPORT Unit: Overview and update December 2016

Overview SUPPORT Unit update Data plan draft What to expect over the coming months

Mission and Goals To support the conduct and implementation of high quality patient-oriented research Build BC’s capacity to conduct and implement high quality patient-oriented research in all regions of the province Increase the quality and impact of patient-oriented research across BC Ensure ongoing support for patient-oriented research in all regions of the province

About the Unit: One of several SUPPORT Units (Support for People and Patient- Oriented Research and Trials Units) established across the country as part of Canada’s Strategy for Patient-Oriented Research (SPOR) led by the Canadian Institutes of Health Research (CIHR) Part of the developing BC Academic Health Science Network (BC AHSN) Preparing for regular operations that will see the Unit supporting, streamlining and increasing patient-oriented research throughout BC

About the Unit (cont.) Two main roles: Providing services to researchers, patients, health care providers and health system decision makers Services to include patient and stakeholder engagement, research navigation, data access and use, knowledge translation, and training and capacity development 2. Facilitating initiatives identified as provincial priorities Ultimate goals: improving patient experiences, health outcomes and the health system Budget is funded equally by CIHR and BC funding partners

What is patient-oriented research? Our definition Research that: engages patients as partners focuses on patient-identified priorities with the goals of improving patient experiences, health outcomes and the health system Also to note, patient-oriented research is conducted by multidisciplinary teams in partnership with other relevant stakeholders.

Are Canadians and British Columbians interested 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?

[Note that the Unit model needs some updating – replacing “Career development” with “Training and capacity development” and some updates to the methods cluster section - which we’re currently working on.]

Current status/activities Required information about implementation and operations plan submitted to CIHR by Sep. 9/16, covering: Governance structure Detailed work plan Patient engagement Training and capacity development Performance measurement Continuing to work on: Provincial hub development Regional centre development Methods clusters Data plan Etc.

Data Plan - Overview The data-related plan for the BC SUPPORT Unit contributes to, but is only one piece of, the plans of the Unit as a whole. Similarly, the BC SUPPORT Unit data plan relates to but is only one part of a broader BC health data strategy that is still being developed. The BC SUPPORT Unit data plan affects a wide variety of stakeholders, as it is central or underpinning to the whole of the Unit. This data plan describes an overall vision and a broad set of objectives. These will be augmented with a series of goals and activities, concentrating more heavily on the next 1-2 years.

Goal - Data The data-related goal for the BC SUPPORT Unit is to Increase the availability and utility of data and related services to support high quality patient-oriented research, including clinical trials

Opportunities Commitment to transformative change – both in health sector and in government approach to data overall Opportunity to capitalize on many large-scale initiatives having similar, overlapping objectives Build on significant investment in and development of the provincial data platform Learn from what other SUPPORT Units and similar international initiatives are doing

Data Objectives – 1 Develop shared technical, policy and process standards that comply with BC’s regulatory environment, conform with public / patient expectations about data use, and increase the comfort (and therefore willingness) of data providers to share data Standards that need to be in place to coordinate building, housing and provisioning data. This includes technical considerations about metadata definitions, storage and movement of data, as well as procedural considerations around acceptable uses of those data. Note that there are implications of this beyond the Unit.

Data Objectives – 2 Improve the speed and transparency of research data access Implementation of standards described above (streamlining, access to aggregates, indicators) to ensure that services and data access rules are well understood and occur in a timely manner.

Data Objectives – 3 Broaden the array of available data Includes “direct access” for more contemporaneous data, and more data (PREMs, PROMs, EMR)

Data Objectives – 4 Enable privacy-sensitive primary data collection and use Enable collection, storage, access and potentially re-use of data collected though research, e.g., surveys, samples

Data Objectives – 5 Great efficiency and quality of data-based research Establish research supports for the full research life-cycle, from development of questions (feasibility) to execution of analyses. (Metadata, re-usable analytics, etc.)

Data Objectives – 6 Provide data-related supports for patient-oriented clinical trials Access to specific tools and resources to support and encourage patient-oriented clinical trials

Data Objectives – 7 Continuous learning and raising BC’s profile as an innovative place to do research Need to be responsive to changing technology and stakeholder expectations, as well as to learn from what similar units are doing

More information/Sign up for email updates: What is next? Still lots of planning But things already moving Lots of opportunity to be involved Very open to your ideas and priorities More information/Sign up for email updates: www.bcsupportunit.ca