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

* SUPPORT FOR PEOPLE AND PATIENT-ORIENTED RESEARCH AND TRIALS (SUPPORT) UNITS

0Agenda Welcome and Introduction Pat McGrathUpdate on CIHR SUPPORT Unit David AndersonMaritime SUPPPORT Unit application Adrian LevyResearcher engagement Bill GardnerCIHR mental health network Stan Kutcher CIHR primary care network Fred BurgeHealth District Perspective Pat McGrathNSHRF Support Krista ConnellNBHRF Support Bruno BattistiniNB Research Data Repository Ted McDonald

Discussion - AllSPOR Update - January 8, 20131David starts here1CIHR SUPPORT UnitJanuary 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, 201322SUPPORT UnitsCollaboration 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, 201333Planning ActivitiesOctober 2010 - Agreement to apply for Maritime UnitFocus: linked admin health databases registriesEndorsed by Premiers, Deputy Ministers, NS Council of Health District CEOsFunding commitments from NSHRF and NBHRFSupport from individual groups of health researchers in MaritimesPublic engagement meetings

SPOR Update - January 8, 201344Rubber Hits the RoadOctober 1, 2012: CIHR call for draft business planNovember 1, 2012: Draft business plan submittedMarch 1, 2013: Final proposal

Interim initiatives (January, February 2013):Workshop meeting with CIHR Jan 17Provincial meetings with Health ResearchersProvincial priority planning meetings with DHW and districtsPublic engagement sessions in NBSPOR Update - January 8, 201355CollaborationAcademicUniversity of New BrunswickUniversit de MonctonAcadia University Dalhousie University St Marys UniversitySt Francis Xavier University University of Prince Edward IslandAtlantic Regional Training Program in Health Services Research

Decision- and Policy-Makers NB Department of Health & Wellness Horizon HealthVitalit Health Network NS Department of Health & WellnessNS health authorities

Research FoundationsNB Health Research FoundationNS Health Research Foundation

Other Supporting Groups and UnitsNS Cochrane Research Centre Integrated Health Research Training PartnershipResearch Methods UnitPopulation Health Research Unit NB Institute for Research, Data and TrainingDalhousie Centralized Operation of Research Equipment and SupportsSPOR Update - January 8, 20136David starts here6Draft Proposal1. Vision 2. Key Components3. Summary of Participants4. Alignment with Jurisdictional Priorities and National SPOR Strategy5. Governance6. Performance Measurement 7. Stakeholder Engagement8. AppendicesSPOR Update - January 8, 20137Adrian starts here7CIHR - GoalsSUPPORT 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, 20138

8CIHR ObjectivesIdentify 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, 20139

9The SPOR Steering Committee has emphasized the need for health systems leadership and engagement of patients in all aspectsCIHR - Vision for SUPPORT UnitsHealth Care ProfessionalsResearchersKey stakeholders are expected to be involved in the development of all aspects of a SUPPORT Unit via a collaborative leadership approachPolicy Makers/ Funders/Health AuthoritiesPublic/ PatientsSPOR Update - January 8, 20131010CIHR - Vision for SUPPORT UnitsSix core functions for the SUPPORT Units have been identified: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. Data Platforms & ServicesMethods Support & DevelopmentHealth Systems, KT & ImplementationReal World Clinical TrialsConsultation & Research ServicesCareer Development in Methods & HSRCollective PrioritiesSPOR Update - January 8, 201311Data Platforms & ServicesTimely access to requested dataData linkage of routinely collected health dataIntegrated new data sources, use of EHRs Adequate capacity to conduct analyses of longitudinal and linked data

Methods Support & DevelopmentNew advanced methods developed in clinical, health services research, population health interventions, health economics Led by Applied Methods Chair / senior investigator

Consultation and Research ServicesKey stakeholders of jurisdiction access services on design, measurement, methods development, data analysis, economic evaluation, literature review, scientific writing, project management, Provided by team of senior post-doctoral students, lead by senior investigator / Applied Methods Chair

Career Development in MethodsInnovative, multi-disciplinary training programs in POR:Management and utilization of large data sets Advanced methodologies for data analysisHealth economics, biostatistics, epidemiology

Real World Clinical TrialsSupport innovative world clinical trials that change health outcomes and support decision-makers, compare effectiveness and/or the comparative safety of treatments in the real-world healthcare environment

Health Systems, KT & ImplementationComprehensive, innovative health systems research programEnd of grant/project KT; integrated KTPromote discovery of more effective approaches to implement clinical and HSRImprove quality of health services

11MARITIMES SPOR SUPPORT UNIT: LOGIC MODELSPOR Update - January 8, 2013

1212Existing InfrastructurePopulation Health Research UnitResearch Methods UnitNS Cochrane Resource CentreAtlantic Interdisciplinary Research NetworkCanadian Longitudinal Study for Health and AgingHealth and Environments Research Centre LaboratoryNB Institute for Research, Data and TrainingNB Social Policy Research NetworkAtlantic Regional Training Centre in Applied Health Services ResearchHealth and Education Research GroupStatistics Canada Research Data Centres in Halifax, Moncton and FrederictonIWK Interdisciplinary Research Team

SPOR Update - January 8, 20131313Proposed Governance OverviewShared decision-making

Academia, government, and health authorities

De-centralized governance

Interactive web-based knowledge exchange portal

Central knowledge innovation hub

SPOR Update - January 8, 20131414MARITIMES SPOR SUPPORT UNIT: GOVERNANCESPOR Update - January 8, 2013

1515MARITIMES SPOR SUPPORT UNIT: GOVERNANCESPOR Update - January 8, 2013

1616NS (%)NB (%)General Management of SUPPORT Unit90Data Platforms and Services2118Methods Support and Development1121Health Systems, KT & Impl.HSR2022Real World Clinical Trials1116Career Development in Methods and HSR2721Consultation and Research Services23SUMMARY OF FUNDINGSPOR Update - January 8, 20131717SPOR Resources for ResearchersAccess to Data setsMethodological Consultation services on research design and interpretationPartial support for a limited number of faculty FTEs in areas relevant to patient-oriented researchSPOR Update - January 8, 201318Bill starts here 18Access to Data SetsAccess 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 diseasesSPOR Update - January 8, 20131919How Researchers Can Use SUPPORT Unit DataAccess 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, 20132020Methodological ConsultingThere 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, 20132121Support for New FacultyThe 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, 20132222

23SPOR Update - January 8, 2013Fred starts here23

Example 1: Canadian Primary Care Sentinel Surveillance Network36 FPs, 7NPs63,000 patients

Example 2: Networked Information SystemDataset for Cancer and Other Chronic Conditions with an End of Life Care PhaseCancer Registry (includes death information from Vital Statistics)Halifax and Cape Breton Palliative Care Program DataHospital discharge data from Canadian Discharge Abstract databasePalliative radiotherapy and medical oncologyFamily and specialist physician billings dataContinuing care (home care and nursing)Previous cancer database analysisMedication dataMedications in progress Death certificate information from Vital Statistics for all chronic conditionsCardiovascular and Diabetes disease registriesColchester Palliative Care Program data3x3 NELS in progress

25SPOR Update - January 8, 2013Ted 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 BrunswickHealth: DAD, physician billing & Medicare, cancer screeningChildren and Youth: CSDS, childcare, test scores, enrolmentPeople 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, 2013NB Institute for Research, Data and Training26Ted starts here26NB Institute for Research, Data and TrainingNew 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 completedPHIPPA 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, 201327Other DevelopmentsNew 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 developmentCanadian Cancer Registry Vital StatisticsCensus 1991 CCR VS Tax file OHIP billing hospital discharge abstractsSPOR Update - January 8, 201328Questions?We welcome your feedback and input!SPOR Update - January 8, 20132929MHDC Roles and ResponsibilitiesMHDC BOARD Oversees budget Ensures alignment with CIHR, provincial and health authority prioritiesMHDC OPERATIONS MANAGEMENT COMMITTEESets standards for common data setsPlans and implements Maritimes-wide projects/datasetsAllocates CIHR fundsMethodological support for design and statistics Develops and implements patient reported outcomes servicesNB OPERATIONSPlans and implements NB projects/datasetsHosts NB dataAllocates NB-matchingfunds and resourcesNS OPERATIONSPlans and implements NS projects/datasetsHosts NS dataAllocates NS-matchingfunds and resourcesPEI OPERATIONSPlans and implements PEI projects/datasetsHosts PEI dataAllocates PEI-matchingfunds and resources1717