文章基本信息

标题：Transferring Knowledge About Human Subjects Protections and the Role of Institutional Review Boards in a Community-Based Participatory Research Project
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作者：Raymond R. Hyatt ; David M. Gute ; Alex Pirie 等
期刊名称：American journal of public health
印刷版ISSN：0090-0036
出版年度：2009
卷号：99
期号：Suppl 3
页码：S526-S531
DOI：10.2105/AJPH.2008.155390
语种：English
出版社：American Public Health Association
摘要：Among the first tasks in a collaboration between Tufts University and community organizations in Somerville, MA, was designing an interview instrument to assess occupational health needs among immigrant workers. Human subjects protections was a critical issue, but community partners were not well informed about the need for such protections or the role of the institutional review board (IRB). During research meetings, members of the team from Tufts trained community collaborators to work with research participants and organized a presentation by a key university IRB administrator. We present findings from the process evaluation of this project and suggest ways to (1) assess community partners' understanding about working with research volunteers, (2) train collaborators, and (3) involve IRBs. THE IMPORTANCE OF THE community-based participatory research (CBPR) model has been well demonstrated, as have the benefits for both researchers and community partners. In addition to their many skills and talents in creating, maintaining, and evaluating community programs, community partners may enable researchers to gain access to communities where there are known or perceived barriers to the recruitment of participants. Collaboration in research with academic partners may provide community organizations and leaders access to university resources, increase their own presence and position within their community, and add to their legitimacy with community members.^{1 , 2} Working together, both partners become involved in identifying social problems, understanding the importance of such problems to community members, and generating interventions and new research hypotheses. Examples of successful CBPR approaches include the study of the health of young children, behaviors of drug users and dealers, and attitudes of members of close-knit religious communities.^{3 – 8} One question often addressed in CBPR is how to conduct ethical and participatory research in a community where there are strong community organizations with leaders who do not have extensive research training. In such cases, academic researchers may undervalue the role of the community partners, and community members without advanced formal education may be taken for granted and have their opinions dismissed, particularly when research findings are interpreted and disseminated. University researchers may feel that they have worked hard to establish their own credibility in an area of expertise and find it difficult to accept the expertise that community leaders have gained through experience. These attitudes can make partnerships uneasy and can lead to difficulties when planning future research endeavors.^{9 – 11} The participatory component of CBPR may then be reduced to the use of the community leaders to gain access to participants or to periodic meetings of a community advisory committee to hear a progress report from the research team. Academic researchers and community partners need each other to address complex social and health issues, even though trust can be difficult to establish and maintain. An important dimension in this relationship is the degree of authority over the research plan, program execution, and interpretation of results exercised by the community.^{12 – 14} For their part, community leaders are sometimes apprehensive that university researchers will simply use their community as a research laboratory and then abruptly disappear when the study is completed. Community-based organizations are often concerned about control of research findings that may cast a negative light on their community when findings are published and may be covered in the popular press. Examples include studies that have focused on gang crime, prostitution, and environmental waste.¹⁵ In addition, community organizations that work directly with community members who become human research participants often do not have access to an institutional review board (IRB). Because their mission is programming rather than research, an IRB is not required and oversight may be accomplished by an advisory board or board of directors. By contrast, university research protocols are reviewed and approved by an IRB whose charge is to monitor human subjects protections and risks to human participants in university research. When university IRBs are charged to review and approve protocols for which community organizations are full partners in the research, misunderstandings can arise and can lead to mistrust and eventually to the demise of the partnership. During a CBPR project between Tufts University and organizations in Somerville, MA, we discovered gaps in knowledge and accumulated mistrust. We sought to determine whether an education and training intervention involving both our community partners and IRB leadership could resolve these issues.