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,Click to edit Master title style,Click to edit Master text styles,Second level,Third level,Fourth level,Fifth level,*,*,Click to edit Master title style,Click to edit Master text styles,Second level,Third level,Fourth level,Fifth level,*,*,Setting the Stage:The Landscape of CBR and Research Ethics Review,NCEHR;CIHR project,Deborah Poff,B.McGillivray,OHTN,CBR&Ethics Workshop,May 6,2021,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,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,How we Gathered information,Questionnaire REBs,Questionnaire funders,Interviews,Face-to-face meetings,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,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,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,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,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,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,Role of academic researcher,Scientific guidance,Methodological and statistical expertise,Experience in the research process,Role is not to take over the process,Role of community-based researcher,Knowledge of the community and its needs,Guidance on relevance and interpretation,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 participants time and involvement,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,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.,Themes:Community based REBs,Resources this is either added to ones 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,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
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