Applying Community-Based Participatory Research Principles and Approaches in Clinical Trials: Forging a New Model for Cancer Clinical Research

Community-Campus Partnerships for Health, USA.
Progress in community health partnerships: research, education, and action 03/2010; 4(1):37-46. DOI: 10.1353/cpr.0.0103
Source: PubMed


Although an estimated 20% of adult cancer patients are medically eligible for a cancer treatment clinical trial (CCT), adult trial participation in the U.S. remains under 3%.- Participation rates are even lower among ethnic and racial minorities and the medically underserved, who tend to have higher cancer mortality rates than the population as a whole.- Given persistent cancer health disparities in these populations, cancer clinical trial participation is increasingly an issue of social justice. Community-based participatory research (CBPR) approaches have been repeatedly recommended as a key strategy for increasing and diversifying cancer clinical trial participation and enhancing their relevance and quality. In 2006, Community-Campus Partnership for Health (CCPH) and the Education Network to Advance Cancer Clinical Trials (ENACCT) received funding from the Agency for Healthcare Research and Quality and the National Cancer Institute (NCI), along with industry and nonprofit partners, to develop the first set of national recommendations to employ CBPR approaches in multisite, phase III cancer clinical trials. The Communities as Partners in Cancer Clinical Trials: Changing Research, Practice and Policy final report, developed through a national advisory committee, two stakeholder meetings and a public vetting process, makes more than fifty detailed recommendations to engage communities in specific and meaningful ways throughout the cancer clinical trial process.1 The report is the first to provide specific guidance as to how and why clinical trials should involve communities affected by cancer-from trial design to implementation to dissemination of results. This paper describes the background and rationale for the initiative, the process used to develop and disseminate the report, and the challenges and opportunities for implementing the report's community-based approaches to cancer clinical research.

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    • "For example, only about 60% of US National Cancer Institute (NCI)-sponsored trials are completed and published (Nass et al, 2010). In addition, certain patient populations are under-represented, resulting in the recent development of several national and international programmes to address the problem of slow and selective recruitment (EDICT, 2008; Lally and Crome, 2010; Seifer et al, 2010). "
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    ABSTRACT: Creating social justice involves changing inequitable systems, policies, cultures, and values, and fundamentally redefining how we understand community, health, science, knowledge, and evidence. This demands that we challenge and change the assumptions, systems, policies, culture, and values of the everyday organizations in which we work as well as the major institutions that shape and govern us. In this issue of Progress in Community Health Partnerships, which is dedicated to work by members of Community–Campus Partnerships for Health (CCPH), six papers demonstrate the transformational power of partnerships and point to the larger systems changes that are needed to achieve health equity—the ultimate goal of community-based participatory research (CBPR). Three papers explicitly identify academic systems as hindering progress toward this goal by narrowly defining rigor and evidence. An emerging international collaboration seeks to leverage the results of CBPR for greater influence on health policy decisions by developing common research definitions, setting standards for scientific quality, and synthesizing findings. A Native health leadership initiative demonstrates how storytelling and different ways of knowing can both challenge and coexist with traditional Western approaches to teaching, mentoring and professional development. The Communities as Partners in Cancer Clinical Trials project articulates how and why CBPR principles and approaches can be applied in every phase of cancer clinical trials, a complex system that, although involving patient advocates to some extent, is largely investigator driven. Assumptions about what constitutes knowledge and who may contribute to its development and dissemination are being challenged by the growing use of arts-based participatory methods in CBPR. Four papers in this issue apply these methods to collect data, disseminate findings, and build community capacity. Partners in Wisconsin employ fotonovelas to increase health literacy among Latinas. Adolescent girls in Nebraska document and describe their community's strengths, needs and opportunities for action through photovoice. A photo-elicitation process in Missouri stimulates understanding and action around the social determinants of health. A team from Washington state incorporates storytelling as an integral component of its strategy for developing Native health leaders. The diverse products generated from these projects—from educational DVDs to instructional manuals to online training modules—challenge the traditional academic system that views peer-reviewed journal publication as the gold standard of quality scholarship and the impact score of the journal as the marker of its impact. Fortunately, efforts are underway to address these challenges. In November 2009, CCPH launched as the first online mechanism for peer-reviewed publication of products of health-related community-engaged scholarship that are in forms other than journal manuscripts. It should be no surprise to readers of PCHP that editor-in-chief Eric Bass served on the design team for and that the publishing vehicles are collaborating to encourage authors of one to also submit to the other. Founded in 1996 as a nonprofit membership organization, CCPH promotes health through partnerships between communities and higher educational institutions and pursues six strategic goals: 1. To combine the knowledge, wisdom and experience in communities and in academic institutions to solve major health, social, and economic challenges; 2. To build the capacity of communities and higher educational institutions to engage each other in authentic partnerships; 3. To support communities in their relationships and work with academic partners; 4. To recognize and reward faculty for community engagement and community-engaged scholarship; 5. To develop partnerships that balance power and share resources equitably among partners; and 6. To ensure that community-driven social change is central to service learning and CBPR. At a grassroots level, CCPH members are advancing these goals in their work on a daily basis. What binds them is a commitment to social justice and a passion for the power of partnerships to transform communities and academe. At an organizational level, CCPH seeks to transform practice and policy through knowledge exchange, training and technical assistance, research and evaluation, policy development and advocacy, and coalition building. Theme journal issues and are two examples of the practical ways that CCPH serves a unique leadership role for CBPR and community–campus partnerships more broadly. Transformation through partnerships can occur on a personal level as well, of course, by encouraging self-reflection and challenging personal...
    Progress in community health partnerships: research, education, and action 01/2010; 4(1):1-3. DOI:10.1353/cpr.0.0107
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