SPOR-MHD Website

SPOR-MHD Website

SPOR A STRATEGY FOR A PATIENTORIENTED RESEARCH SUPPORT* UNIT IN THE MARITIME PROVINCES SUPPORT FOR PEOPLE AND PATIENT-ORIENTED RESEARCH AND TRIALS (SUPPORT) UNITS * Agenda 1) Welcome and Introduction Pat McGrath 2) Update on CIHR SUPPORT Unit David Anderson 3) Maritime SUPPPORT Unit application Adrian Levy 4) Researcher engagement Bill Gardner 5) CIHR mental health network Stan Kutcher 6) CIHR primary care network Fred Burge 7) Health District Perspective Pat McGrath 8) NSHRF Support Krista Connell 9) NBHRF Support Bruno Battistini 10)NB Research Data Repository Ted McDonald

Discussion - All SPOR Update - January 8, 2013 2 CIHR SUPPORT Unit 1) January 2011: CIHR Published Strategy for PatientOriented Research (SPOR) for Canada 2) 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 practices SPOR Update - January 8, 2013 of best 3

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 4 Planning Activities 1) October 2010 - Agreement to apply for Maritime Unit 2) Focus: linked admin health databases registries 3) Endorsed by Premiers, Deputy Ministers, NS Council of Health District CEOs 4) Funding commitments from NSHRF and NBHRF 5) Support from individual groups of health researchers in Maritimes

6) Public engagement meetings SPOR Update - January 8, 2013 5 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): o o o o 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 6 Collaboration Academic University of New Brunswick Universit de Moncton Acadia University Dalhousie University St Marys 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 Vitalit 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 7 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 8

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 9 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, biostatistical analyses, 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 10 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 The SPOR Steering Committee has emphasized the need for health systems leadership and engagement of patients in all aspects SPOR Update - January 8, 2013 11 CIHR - Vision for SUPPORT Units Six core functions for the SUPPORT Units have been identified: Data Platforms & Services Consultation & Research

Services Career Development in Methods & HSR Methods Support & Development Collective Priorities Health Systems, KT & Implementation Real World Clinical Trials 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 12 MARITIMES SPOR SUPPORT UNIT: LOGIC MODEL SPOR Update - January 8, 2013 13 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

14 Proposed Governance Overview Shared decision-making o Academia, government, and health authorities De-centralized governance Interactive web-based knowledge exchange portal Central knowledge innovation hub SPOR Update - January 8, 2013 15 MARITIMES SPOR SUPPORT UNIT: GOVERNANCE MHDC Roles and Responsibilities MHDC BOARD

Oversees budget Ensures alignment with CIHR, provincial and health authority priorities MHDC OPERATIONS MANAGEMENT COMMITTEE Sets standards for common data sets Plans and implements Maritimes -wide projects/datasets Allocates CIHR funds Methodological support for design and statistics Develops and implements patient reported outcomes services NB OPERATIONS Plans and implements NB projects/datasets

Hosts NB data Allocates NB-matching funds and resources NS OPERATIONS Plans and implements NS projects/datasets Hosts NS data Allocates NS-matching funds and resources PEI OPERATIONS Plans and implements PEI projects/datasets Hosts PEI data Allocates PEI-matching funds and resources 17

SPOR Update - January 8, 2013 16 MARITIMES SPOR SUPPORT UNIT: GOVERNANCE SPOR Update - January 8, 2013 17 SUMMARY OF FUNDING NS (%) General Management of SUPPORT Unit NB (%) 9

0 Data Platforms and Services 21 18 Methods Support and Development 11 21 Health Systems, KT & Impl.HSR 20 22

Real World Clinical Trials 11 16 Career Development in Methods and HSR 27 21 2 3 Consultation and Research Services

SPOR Update - January 8, 2013 18 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 patientoriented research SPOR Update - January 8, 2013 19 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 20 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

21 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 22 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 23 SPOR Update - January 8, 2013 24 Example 1: Canadian Primary Care Sentinel Surveillance Network 36 FPs, 7NPs 63,000 patients

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 Halifax and Cape Breton Palliative Care Program Data Medication data Hospital discharge data from Canadian Discharge Abstract database Colchester Palliative

Care Program data Family and specialist physician billings data Continuing care (home care and nursing) Previous cancer database analysis 3x3 NELS in progress Medications in progress SPOR Update - January 8, 2013 26

NB Institute for Research, Data and Training 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 o Health: DAD, physician billing & Medicare, cancer screening o Children and Youth: CSDS, childcare, test scores, enrolment o 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 SPOR Update - January 8, 2013 27 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: o Facility has been completed o PHIPPA legislation now allows the Department of Health to designate a facility as a research data centre. o We are currently working on the TRA, PIA, and a Data Sharing Agreement with the Province SPOR Update - January 8, 2013 28 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 o Canadian Cancer Registry Vital Statistics o Census 1991 CCR VS Tax file o OHIP billing hospital discharge abstracts SPOR Update - January 8, 2013 29 Questions? We welcome your feedback and input! SPOR Update - January 8, 2013 30

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