1. BC SUPPORT Unit: Overview and update
December 2016

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

3. 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

4. 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

5. 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

6. 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.

7. 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?

8. [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.]

9. 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.

10. 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.

11. 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

12. 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

13. 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.

14. 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.

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

16. 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

17. 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.)

18. 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

19. 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

20. 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 updates: