Setting the Stage: The Landscape of CBR and Research Ethics Review

1. Setting the Stage: The Landscape of CBR and Research Ethics Review NCEHR; CIHR project Deborah Poff, B. McGillivray OHTN, CBR & Ethics Workshop, May 6, 2009

2. The landscape • It is fair to say that the landscape in Canada is shifting quickly • Community organizations desire more autonomy in ethics review of CBR • More groups are setting up review committees of their own, like the Aboriginal review committee in Manitoulin Island which has existed for some time • Many community organizations share resource limitations, succession difficulties, limited educational opportunities and governance and structural difficulties

3. The Study • The information presented here is based on a CIHR funded study that Barb McGillivray and I did for NCEHR over a two year period

4. How we Gathered information Questionnaire – REBs Questionnaire – funders Interviews Face-to-face meetings

5. Respondents • 5 REBs filled out our REB questionnaire • 8 interviews were conducted with Community-based REBs, plus 1 regional hospital based REB and 1 university REB which emphasized that it reviewed CBR • 6 research funders completed the research funder questionnaire

6. Responses from Community-based REBs Role – guidance, consultation, building capacity, building research relationships Role not monitoring Number of Protocols reviewed varied significantly – from 2 – 25 yearly REBs ranged from those attached to funding foundation or quite free standing

7. REB ethical challenges Roles of researcher and participants were sometimes confounded; while this is part of CBR participatory research, this can become more complex in small, insular communities Free and informed consent or pressure to participate by members of the community in small or particular types of communities research of this type “more fluid”; needing an ongoing process with the REB confidentiality

8. REB issues definition of what is research versus service or advocacy assessment of methodology, lack of breadth or depth among members of REB capacity building of members Funding - constraints conflict of interest Succession of members for stability, continuity and sustaining the REB

9. REB issues (2) relationship of REB with host organization – may depend on personal relations which may disappear with change of staff confidentiality cultural education OCAP (Ownership, Control, Access and Possession) principles are important for First Nations and Aboriginal communities

10. Community role key drivers, identify research questions, stakeholders, identify participants, analyze and disseminate results, and work for policy changes provide feedback regarding outcomes and dissemination strategies

11. Role of academic researcher Scientific guidance Methodological and statistical expertise Experience in the research process Role is not to take over the process

12. Role of community-based researcher Knowledge of the community and its needs Guidance on relevance and interpretation

13. Concerns steep learning curve for the CB-researcher scientifically sound research – the TCPS-type concern – whether the research is sufficiently sound to be worth the participant’s time and involvement

14. Issues with review researcher access – to education and to REB itself multi-site review having a mentoring process in place establishing whether a partnership exists

15. Themes: Community Researchers Need for capacity building and sharing of expertise Need staff training to provide support and administration Limited resources in the communities make it daunting when funders request revisions to proposals Methodological issues – again capacity issues, local researchers sometimes find issues challenging due to lack of training Suggested remedies: The need for workshops, conferences, mentoring, internet support, listserv One group also recommended conferences to share results and honour the importance of the community-based research that was being conducted. Some researchers work in geographically isolated areas where there are limitations for attendance at these kinds of venues.

16. Themes: Community based REBs Resources – this is either added to one’s job or dependent upon volunteers Monitoring – what happens down the road? What happens with the projects afterwards? Administrative support – what are the necessary supports for the REB? How do you establish a friendly face to the process? Ongoing need for people with content specialization given the breadth of the topics Sustainability of the REB – successorship Accountability – REB must be accountable and responsible to researchers and others Ongoing education both for existing and new members; maintenance of good procedures

17. Themes: for Aboriginal REBs No funds for fulltime researcher All financial support is dependent on another organization and this might change with change in personnel – including space, paper supplies, approval of work, access to computers There is a need for: Travel funds Ability to attend courses, conferences, consult with other REBs Laptop, paper supplies, secure space Funds to support volunteers and researchers living on fixed incomes

18. Proposed community based alternative structure One group we interviewed proposed a germane suggestion for our discussion today – an alternative structure for vesting authority with community based REBs with a mediating NGO facilitating approval working between a university and communities

19. What are the needs for successful CBR? Training and mentoring • formal training and mentoring of community-based researchers through their first grant application • Successful mentoring should be a component of applying for ethical review

20. Training of REB members • About the various methodologies utilized with community-based research • About the process of setting up relationships with communities • In order to ensure a true collaborative relationship exists • Special issues: possible conflicts between community and individual consent, confidentiality at the family and community level, protection of data, and the need to communicate back to the community.

21. Formats for training • develop workshops highlighting education of community members, specific issues with this type of research, and having an understanding of overall ethical principles • researchers and REBs based in the community more likely to be volunteer or to be poorly funded such that any educational activities would need to be heavily subsidized • other modalities might include the development of online courses.