SPOR A Strategy for a Patient-Oriented Research SUPPORT* Unit in the Maritime Provinces

1. SPORA Strategy for a Patient-Oriented Research SUPPORT* Unit in the Maritime Provinces * SUPPORT FOR PEOPLE AND PATIENT-ORIENTED RESEARCH AND TRIALS (SUPPORT) UNITS

2. Agenda Welcome and Introduction – Pat McGrath Update on CIHR SUPPORT Unit – David Anderson Maritime SUPPPORT Unit application – Adrian Levy Researcher engagement – Bill Gardner CIHR mental health network – Stan Kutcher CIHR primary care network – Fred Burge Health District Perspective – Pat McGrath NSHRF Support – Krista Connell NBHRF Support – Bruno Battistini NB Research Data Repository – Ted McDonald Discussion - All SPOR Update - January 8, 2013

3. CIHR SUPPORT Unit January 2011: CIHR Published “Strategy for Patient-Oriented Research (SPOR) for Canada” Pivotal component: 9 regional research SUPPORT Units  “Establish core competencies in methodology for patient-oriented research”  “Lead and facilitate decision-making within the health services and foster the implementation of best practices” SPOR Update - January 8, 2013

4. SUPPORT Units Collaboration of policy makers/funders/health authorities, health care professionals, health researchers, and the public/patients Non-competitive application process Will work closely with national research Networks SPOR Update - January 8, 2013

5. Planning Activities October 2010 - Agreement to apply for Maritime Unit Focus: linked admin health databases  registries Endorsed by Premiers, Deputy Ministers, NS Council of Health District CEOs Funding commitments from NSHRF and NBHRF Support from individual groups of health researchers in Maritimes Public engagement meetings SPOR Update - January 8, 2013

6. Rubber Hits the Road • October 1, 2012: CIHR call for draft business plan • November 1, 2012: Draft business plan submitted • March 1, 2013: Final proposal • Interim initiatives (January, February 2013): • Workshop meeting with CIHR – Jan 17 • Provincial meetings with Health Researchers • Provincial priority planning meetings with DHW and districts • Public engagement sessions in NB SPOR Update - January 8, 2013

7. Collaboration Academic University of New Brunswick Université de Moncton Acadia University Dalhousie University St Mary’s University St Francis Xavier University University of Prince Edward Island Atlantic Regional Training Program in Health Services Research Decision- and Policy-Makers NB Department of Health & Wellness Horizon Health Vitalité Health Network NS Department of Health & Wellness NS health authorities Research Foundations NB Health Research Foundation NS Health Research Foundation Other Supporting Groups and Units NS Cochrane Research Centre Integrated Health Research Training Partnership Research Methods Unit Population Health Research Unit NB Institute for Research, Data and Training Dalhousie Centralized Operation of Research Equipment and Supports SPOR Update - January 8, 2013

8. Draft Proposal 1. Vision 2. Key Components 3. Summary of Participants 4. Alignment with Jurisdictional Priorities and National SPOR Strategy 5. Governance 6. Performance Measurement 7. Stakeholder Engagement 8. Appendices SPOR Update - January 8, 2013

9. CIHR - Goals “SUPPORT Units will develop provincial and/or regional centres of expertise to enhance patient-oriented research and facilitate studies involving patients and/or patient records.” SPOR Update - January 8, 2013

10. CIHR – Objectives • “Identify needs of patients and knowledge users and facilitate research that addresses them. • Provide a critical mass of multi-disciplinary expertise in patient-oriented research. • Assist decision makers and investigators in study design, biostatisticalanalyses, data management, project management, and regulatory compliance. • Advance methods and training in comparative effectiveness research. • Provide access to linked data across existing or new databases.” SPOR Update - January 8, 2013

11. The SPOR Steering Committee has emphasized the need for health systems leadership and engagement of patients in all aspects CIHR - Vision for SUPPORT Units Key stakeholders are expected to be involved in the development of all aspects of a SUPPORT Unit via a collaborative leadership approach Public/ Patients Health Care Professionals Researchers Policy Makers/ Funders/ Health Authorities SPOR Update - January 8, 2013

12. CIHR - Vision for SUPPORT Units • Data Platforms & Services • Methods Support & Development Six core functions for the SUPPORT Units have been identified: • Health Systems, KT & Implementation • Consultation & Research Services Collective Priorities • Real World Clinical Trials • Career Development in Methods & HSR These functions will be scoped and tailored based on the needs and aspirations of each jurisdiction.CIHR and jurisdictions will work together to develop a shared vision for their SUPPORT Unit. SPOR Update - January 8, 2013

13. MARITIMES SPOR SUPPORT UNIT: LOGIC MODEL SPOR Update - January 8, 2013

14. Existing Infrastructure • Population Health Research Unit • Research Methods Unit • NS Cochrane Resource Centre • Atlantic Interdisciplinary Research Network • Canadian Longitudinal Study for Health and Aging • Health and Environments Research Centre Laboratory • NB Institute for Research, Data and Training • NB Social Policy Research Network • Atlantic Regional Training Centre in Applied Health Services Research • Health and Education Research Group • Statistics Canada Research Data Centres in Halifax, Moncton and Fredericton • IWK Interdisciplinary Research Team SPOR Update - January 8, 2013

15. Proposed Governance Overview • Shared decision-making • Academia, government, and health authorities • De-centralized governance • Interactive web-based knowledge exchange portal • Central knowledge innovation hub SPOR Update - January 8, 2013

16. MARITIMES SPOR SUPPORT UNIT: GOVERNANCE SPOR Update - January 8, 2013

17. MARITIMES SPOR SUPPORT UNIT: GOVERNANCE SPOR Update - January 8, 2013

18. SUMMARY OF FUNDING SPOR Update - January 8, 2013

19. SPOR Resources for Researchers Access to Data sets Methodological Consultation services on research design and interpretation Partial support for a limited number of faculty FTEs in areas relevant to patient-oriented research SPOR Update - January 8, 2013

20. Access to Data Sets Access to pre-collected, linked and curated individual-level health data, in each of the Maritime provinces Data will include information on health services, treatments, and diseases SPOR Update - January 8, 2013

21. How Researchers Can Use SUPPORT Unit Data Access curated data sets - nominal cost. Free access will be available on a competitive basis e.g., for students or unfunded researchers. SUPPORT Unit will be building new curated data sets. Bring us a proposal! Examples of the kinds of projects SPOR will facilitate. SPOR Update - January 8, 2013

22. Methodological Consulting There will be expanded methodological and statistical consulting services through the Research Methods Unit. By providing a nexus for patient-oriented research, we will provide opportunities for persons with diverse methodological skills to meet and find collaborators. SPOR Update - January 8, 2013

23. Support for New Faculty The SPOR SUPPORT Unit will have funds to provide partial support for new faculty. Support will be targeted to assist departments and programs seeking to fund positions for patient-oriented researchers, or methodological experts in related disciplines. SPOR Update - January 8, 2013

24. SPOR Update - January 8, 2013

25. Example 1: Canadian Primary Care Sentinel Surveillance Network • 36 FPs, 7NPs • 63,000 patients

26. Example 2: Networked Information System Cancer Registry (includes death information from Vital Statistics) Death certificate information from Vital Statistics for all chronic conditions Cardiovascular and Diabetes disease registries Dataset for Cancer and Other Chronic Conditions with an End of Life Care Phase Palliative radiotherapy and medical oncology Hospital discharge data from Canadian Discharge Abstract database Halifax and Cape Breton Palliative Care Program Data Family and specialist physician billings data Continuing care (home care and nursing) Colchester Palliative Care Program data Medication data Previous cancer database analysis 3x3 NELS in progress Medications in progress SPOR Update - January 8, 2013

27. NB Institute for Research, Data and Training SPOR Update - January 8, 2013 • Ted McDonald, Professor of Economics at UNB and Academic Director, NB-RDC, Michael Haan – CRC in Social Policy at UNB • A new state-of-the-art facility on the UNB campus for administrative data from the Province of New Brunswick • Health: DAD, physician billing & Medicare, cancer screening • Children and Youth: CSDS, childcare, test scores, enrolment • People at risk: NBCase, NBFamilies • Infrastructure funds of $1m from CFI, NB Government, NBHRF; project funds from Canadian Breast Cancer Foundation, PETL, Population Growth Division. In-kind contributions from GNB ECO, Health, PETL, SD, PGD

28. NB Institute for Research, Data and Training • New Brunswick currently has no such facility. Researchers seeking to access administrative data from the province face a cumbersome and time consuming process that also imposes a significant burden on government officers • Linking different databases, even within the Department of Health, is difficult • Progress to Date: • Facility has been completed • PHIPPA legislation now allows the Department of Health to designate a facility as a “research data centre”. • We are currently working on the TRA, PIA, and a Data Sharing Agreement with the Province SPOR Update - January 8, 2013

29. Other Developments • New CIHR CRC in the socioeconomic determinants of health at UNB Fredericton is about to be advertised • Statistics Canada Research Data Centre at UNB has new administrative data sources available or in development • Canadian Cancer Registry – Vital Statistics • Census 1991 – CCR – VS – Tax file • OHIP billing – hospital discharge abstracts SPOR Update - January 8, 2013

30. Questions? We welcome your feedback and input! SPOR Update - January 8, 2013