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Addressing the Social Determinants of Health:
Making CBR Work for Communities in Ontario
Sean B. Rourke, PhD
Scientific and Executive Director, Ontario HIV Treatment Network (OHTN)
Associate Professor of Psychiatry, University of Toronto
Scientist, Centre for Research on Inner City Health, St. Michael’s Hospital
Making CBR Matter:
            A Recipe for Success

1.   Strong Strategic Plan
2.   Strong Sector
3.   Mobilizing People
4.   Building Capacity
5.   Mobilize Knowledge
6.   Addressing What's Important to People
OHTN Strategic Plan to 2010:
         Seven Major Objectives
1) Increase #/Capacity of Health Care Providers for HIV Care
2) Support Community to Address Social Determinants of Health
3) Invest Strategically in Research
4) Support Effective and Innovative eHealth and IT Initiatives
5) Revitalize OHTN Cohort Study to Enhance Care in Ontario
6) Support KTE Expertise and Capacity
7) Monitor and Evaluate OHTN Activities
What kind of CBR are we doing ?
CBR that is:

•   Driven by priorities in our community
•   Addresses the social determinants of health
•   Scientifically rigorous and policy relevant
•   Will lead to improvements in health outcomes
    and quality of life for people living with HIV
    and our communities at risk
Where are we going ?

.... and what role/impact do we want to play

• Be a leader in CBR for SDOH in Canada
• Have an impact in Ontario and Canada
How will we get there ?

.... and what do we need to do?

• Build partnerships with community members,
  research groups, policy-makers, and funders
• Build capacity in the community and with
  researchers
• Facilitate and enhance communication across
  sectors
• Build KTE into our work - research in action
The HIV Sector
• HIV/AIDS has long served as a testing
  ground for progressive research designs and
  methodologies.
• Many AIDS service organizations are
  engaged in CBR, with some having the
  capacity and desire to conduct their own
  research
Building an Evidence Base – Methods
    Making Research Work for Community-Based AIDS Organizations in Ontario:
                    Strategies for Linking Research to Action



                                              Team
•    For Ontario ASOs, modified           •   Sean Rourke, PhD (OHTN)
                                          •   Robb Travers, PhD (OHTN)
     Canadian Health Services Research
                                          •   Michael Wilson, MSc. Cand. (OHTN)
     Foundation Survey “Is Research
                                          •   John Lavis, PhD, MD (McMaster University)
     Working For You”?                        Jean Bacon, MA (OHTN)
                                          •   Tarik Bereket, MA (OHTN)
•    Acquire, adapt, assess and apply     •   Shelley Cleverly, MHSc (Ontario AIDS
                                              Network)
     knowledge administered using an      •   Evan Collins, MD (Hassle Free Clinic)
     on-line service                      •   Rick Kennedy (Ontario AIDS Network)
                                          •   Edward McDonnell (OHTN)
•    Email distribution for participant   •   Peggy Millson, MD (University of Toronto)
     recruitment                          •   Ron Rosenes (Canadian Treatment Action
                                              Council)
                                          •   Ruthann Tucker (Fife House)
•    Augmented by on-line and in-
     person focus groups
Building an Evidence Base – Methods
          Facilitating CBR in Ontario’s Community-Based HIV Sector:
                    Baseline Assessment and the Development
                             of a Strategy for Change

•   For Ontario ASOs, modified          Team
    tool Barriers and Facilitators      •   Robb Travers, PhD (OHTN)
    for CBR in Canada (Savan,
    Flicker & Travers, 2005).           •   Sarah Flicker, PhD (York
                                            University)
                                        •   Tarik Bereket, MA (OHTN)
    Measures:
                                        •   Michael Wilson, MSc (cand)
•   Experiences with CBR                    (OHTN)
•   Perceptions of CBR                  •   Shelley Cleverly, MHSc (OAN)
•   Barriers and facilitating factors   •   Colleen McKay, MA (OHTN)
    for CBR
                                        •   Anna van der Meulen, MA
    Administered using an on-line           (OHTN)
    service:
•   Email distribution for
    participant recruitment
Why do Community Organizations do CBR Projects?

100%
 90%
 80%
 70%
 60%
 50%
 40%
 30%
 20%
 10%
  0%
       Assessment Program Eval. Increasing New Program Policy Change   Other
       of Commun.               Commun.       Eval.
          Needs                 Awareness
What Makes CBR Challenging?
•   too many competing demands
•   lack of physical and human resources
•   scarcity of funding
•   time consuming nature of CBR
•   difficulty accessing ethics review
•   concern that results will not be acted upon
CBR Facilitators
Capacity-building
   •   skills-building opportunities for academic partners to learn about community
       concerns
   •   skills enhancing opportunities for community organizations
   •   internships/practicum for students to engage in CBR
   •   internships for community members to engage in CBR

Structural resources
   •   funding for long-term research initiatives
   •   provision of start-up funds
   •   greater involvement of community members

Information resources
   •   documentation of CBR “best practices”
   •   toolkits (e.g. partnership templates)
   •   d-base of CBR-interested community groups and researchers
Mobilizing People
Living & Serving II: Ten Years Later
         A community-based research project on the involvement of
         people living with HIV/AIDS (PHAs) in the AIDS movement in
         Ontario.
Objectives
• identify barriers to meaningful PHA involvement in Ontario
• identify changes since the mid-1990s when Dr. Charles Roy conducted
   the initial study
• develop policies and practices to effect change
Methods
• 12 focus groups across Ontario with key players in the Ontario
   HIV/AIDS community (n=82)
• Qualitative data thematically coded using NVivo 7.0
• Quantitative survey component for EDs at Ontario ASOs
– data collection is ongoing
Living & Serving II: Ten Years Later

Some emerging findings:

•   The benefits of the OCAP principles
•   Need for the movement to be more responsive to the diversity of
    communities affected & to take a social determinants of health
    approach instead of working in identity-based silos
•   The difference between meaningful participation versus tokenism
•   Social policy and programming inconsistent with changing nature of
    HIV
•   Importance of having youth PHA involvement and peer-support
•   Services and programming are not gender sensitive or “women-
    friendly”
•   Not enough training and financing for PHA capacity building
Building Capacity

Capacity-Building Grants

Investment of $400,000.00 for:
   • development of CBR partnerships
   • question identification/priority setting
   • protocol development
Compass Community Toolkit (CBR e-learning)
Mobilizing Knowledge
Knowledge Mobilization Initiatives:
     • Invested 152,000 last year in:
         – Think Tanks
         – Newsletters
         – Seminars
     • Housing & Health
     • Best Practice Recommendations for NEP in Ontario
     • Immigration and HIV


Knowledge Mobilization Fund
     • $250,000.00
     • Objective: To mobilize knowledge from HIV research in Ontario to affect
       community and policy level changes.
Compass Innovation Series

  Objectives

• identify exemplary work that supports the
  operationalization of CBR principles and provide general
  ‘how-to’ information about CBR;
• encourage community consultations/ ‘Think Tanks’ for
  feedback;
• initiate CBR capacity-building at the individual and
  organizational level;
• facilitate networking and partnership development among
  community members, researchers, academics, policy
  makers etc.
Compass Newsletter
Addressing What's Important to People

• Community-Based Research Ethics Review Board

• The Best Practice Recommendations for Needle
  Exchange Programs (NEPs) in Ontario

• Microfinancing for positive women in the GTA

• HIV and Housing Study

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Addressing the Social Determinants of Health:Making CBR Work for Communities in Ontario

  • 1. Addressing the Social Determinants of Health: Making CBR Work for Communities in Ontario Sean B. Rourke, PhD Scientific and Executive Director, Ontario HIV Treatment Network (OHTN) Associate Professor of Psychiatry, University of Toronto Scientist, Centre for Research on Inner City Health, St. Michael’s Hospital
  • 2. Making CBR Matter: A Recipe for Success 1. Strong Strategic Plan 2. Strong Sector 3. Mobilizing People 4. Building Capacity 5. Mobilize Knowledge 6. Addressing What's Important to People
  • 3. OHTN Strategic Plan to 2010: Seven Major Objectives 1) Increase #/Capacity of Health Care Providers for HIV Care 2) Support Community to Address Social Determinants of Health 3) Invest Strategically in Research 4) Support Effective and Innovative eHealth and IT Initiatives 5) Revitalize OHTN Cohort Study to Enhance Care in Ontario 6) Support KTE Expertise and Capacity 7) Monitor and Evaluate OHTN Activities
  • 4. What kind of CBR are we doing ? CBR that is: • Driven by priorities in our community • Addresses the social determinants of health • Scientifically rigorous and policy relevant • Will lead to improvements in health outcomes and quality of life for people living with HIV and our communities at risk
  • 5. Where are we going ? .... and what role/impact do we want to play • Be a leader in CBR for SDOH in Canada • Have an impact in Ontario and Canada
  • 6. How will we get there ? .... and what do we need to do? • Build partnerships with community members, research groups, policy-makers, and funders • Build capacity in the community and with researchers • Facilitate and enhance communication across sectors • Build KTE into our work - research in action
  • 7. The HIV Sector • HIV/AIDS has long served as a testing ground for progressive research designs and methodologies. • Many AIDS service organizations are engaged in CBR, with some having the capacity and desire to conduct their own research
  • 8. Building an Evidence Base – Methods Making Research Work for Community-Based AIDS Organizations in Ontario: Strategies for Linking Research to Action Team • For Ontario ASOs, modified • Sean Rourke, PhD (OHTN) • Robb Travers, PhD (OHTN) Canadian Health Services Research • Michael Wilson, MSc. Cand. (OHTN) Foundation Survey “Is Research • John Lavis, PhD, MD (McMaster University) Working For You”? Jean Bacon, MA (OHTN) • Tarik Bereket, MA (OHTN) • Acquire, adapt, assess and apply • Shelley Cleverly, MHSc (Ontario AIDS Network) knowledge administered using an • Evan Collins, MD (Hassle Free Clinic) on-line service • Rick Kennedy (Ontario AIDS Network) • Edward McDonnell (OHTN) • Email distribution for participant • Peggy Millson, MD (University of Toronto) recruitment • Ron Rosenes (Canadian Treatment Action Council) • Ruthann Tucker (Fife House) • Augmented by on-line and in- person focus groups
  • 9. Building an Evidence Base – Methods Facilitating CBR in Ontario’s Community-Based HIV Sector: Baseline Assessment and the Development of a Strategy for Change • For Ontario ASOs, modified Team tool Barriers and Facilitators • Robb Travers, PhD (OHTN) for CBR in Canada (Savan, Flicker & Travers, 2005). • Sarah Flicker, PhD (York University) • Tarik Bereket, MA (OHTN) Measures: • Michael Wilson, MSc (cand) • Experiences with CBR (OHTN) • Perceptions of CBR • Shelley Cleverly, MHSc (OAN) • Barriers and facilitating factors • Colleen McKay, MA (OHTN) for CBR • Anna van der Meulen, MA Administered using an on-line (OHTN) service: • Email distribution for participant recruitment
  • 10. Why do Community Organizations do CBR Projects? 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Assessment Program Eval. Increasing New Program Policy Change Other of Commun. Commun. Eval. Needs Awareness
  • 11. What Makes CBR Challenging? • too many competing demands • lack of physical and human resources • scarcity of funding • time consuming nature of CBR • difficulty accessing ethics review • concern that results will not be acted upon
  • 12. CBR Facilitators Capacity-building • skills-building opportunities for academic partners to learn about community concerns • skills enhancing opportunities for community organizations • internships/practicum for students to engage in CBR • internships for community members to engage in CBR Structural resources • funding for long-term research initiatives • provision of start-up funds • greater involvement of community members Information resources • documentation of CBR “best practices” • toolkits (e.g. partnership templates) • d-base of CBR-interested community groups and researchers
  • 13. Mobilizing People Living & Serving II: Ten Years Later A community-based research project on the involvement of people living with HIV/AIDS (PHAs) in the AIDS movement in Ontario. Objectives • identify barriers to meaningful PHA involvement in Ontario • identify changes since the mid-1990s when Dr. Charles Roy conducted the initial study • develop policies and practices to effect change Methods • 12 focus groups across Ontario with key players in the Ontario HIV/AIDS community (n=82) • Qualitative data thematically coded using NVivo 7.0 • Quantitative survey component for EDs at Ontario ASOs – data collection is ongoing
  • 14. Living & Serving II: Ten Years Later Some emerging findings: • The benefits of the OCAP principles • Need for the movement to be more responsive to the diversity of communities affected & to take a social determinants of health approach instead of working in identity-based silos • The difference between meaningful participation versus tokenism • Social policy and programming inconsistent with changing nature of HIV • Importance of having youth PHA involvement and peer-support • Services and programming are not gender sensitive or “women- friendly” • Not enough training and financing for PHA capacity building
  • 15. Building Capacity Capacity-Building Grants Investment of $400,000.00 for: • development of CBR partnerships • question identification/priority setting • protocol development
  • 16. Compass Community Toolkit (CBR e-learning)
  • 17. Mobilizing Knowledge Knowledge Mobilization Initiatives: • Invested 152,000 last year in: – Think Tanks – Newsletters – Seminars • Housing & Health • Best Practice Recommendations for NEP in Ontario • Immigration and HIV Knowledge Mobilization Fund • $250,000.00 • Objective: To mobilize knowledge from HIV research in Ontario to affect community and policy level changes.
  • 18. Compass Innovation Series Objectives • identify exemplary work that supports the operationalization of CBR principles and provide general ‘how-to’ information about CBR; • encourage community consultations/ ‘Think Tanks’ for feedback; • initiate CBR capacity-building at the individual and organizational level; • facilitate networking and partnership development among community members, researchers, academics, policy makers etc.
  • 20. Addressing What's Important to People • Community-Based Research Ethics Review Board • The Best Practice Recommendations for Needle Exchange Programs (NEPs) in Ontario • Microfinancing for positive women in the GTA • HIV and Housing Study