SPOR
A STRATEGY FOR A PATIENT-ORIENTED
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
1
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
of best practices”
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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
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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
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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
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Collaboration
Academic
University of New Brunswick
Acadia University
St Mary’s University
University of Prince Edward Island
Decision- and Policy-Makers
NB Department of Health & Wellness
Vitalité Health Network
NS health authorities
Research Foundations
NB Health Research Foundation
Université de Moncton
Dalhousie University
St Francis Xavier University
Atlantic Regional Training Program in Health Services Research
Horizon Health
NS Department of Health & Wellness
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
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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
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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.”
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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.”
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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
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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.
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MARITIMES SPOR SUPPORT UNIT: LOGIC MODEL
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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
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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
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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
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MARITIMES SPOR SUPPORT UNIT:
GOVERNANCE
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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
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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
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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
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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.
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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.
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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.
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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
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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
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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
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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
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Questions?
• We welcome your feedback and input!
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