This special issue of Progress in Community Health Partnerships (PCHP), “Maximizing Community Contributions, Benefits, and Outcomes in Clinical and Translational Research,” seeks to advance the field of community-based health research by providing information, tools, and understanding of the accomplishments, best practices, and challenges that community and academic partners have experienced in their engagement with National Institutes of Health-funded Clinical and Translational Science Awardees (CTSAs) and other research entities.* Much of the editorial work has been performed by guest editors: a collaboration of academics and community-based partners who strived to publish papers that amplify community perspectives in clinical and translational research, including those involving participatory approaches with a wide range of communities, participants, settings, and geographic locations.
The resulting special issue includes papers that cover a wide range of multidisciplinary topics that reflect collaborations across many diverse communities, CTSAs, and community-engaged practice-based research networks. Authored and co-authored by community partners, the papers often reflect the perspectives, experiences, contributions, and value that community partnerships add to the research enterprise. This issue advances novel ideas, evaluates the implementation and development of community– academic partnerships, and highlights best practices. The focus is on lessons learned from community engagement in health research that will strengthen the research enterprise while building community and academic capacity to engage effectively for the improvement of public health in our communities.
The papers in this issue highlight the important concept of community-based participatory research (CBPR), which has varied definitions. CBPR is, however, generally used to describe qualitative, quantitative, and mixed-methods research that is designed, planned, and conducted by and in collaboration with institution-based researchers and “community-based entities,” such as members of community-based organizations, public interest groups, and/or other associations. Investigations are on a topic or area of need identified by members of the community or by the researchers.1–4 CBPR is also considered to be an approach to research that aims to use and develop knowledge, products, and outcomes that are mutually beneficial to researchers and community members.
This issue features eleven papers in five categories: Community Perspective, Original Research, Theory and Methods, Work-in-Progress & Lessons Learned, and Policy and Practice. In response to a national solicitation, 27 manuscripts were received. The guest editors sent the articles out for review to both community and academic reviewers. One guest editor was assigned to each manuscript and led a teleconference discussion of the manuscript with the rest of the guest editors and then worked with PCHP’s editor to give feedback to authors, almost always seeking to highlight the community’s perspective on the collaboration. Ultimately, nine manuscripts were rejected, seven were judged as less in concert with the goals of the special issue and were accepted with revision for a regular issue of PCHP, five were accepted for the special issue with minor revisions, and six were [End Page 231] accepted for the special issue with major revisions. Among all the submissions, there were 42 community authors, three of whom were the lead author; three quarters (74%) of the manuscripts had at least one community author. Readers of this volume will gain insights and knowledge in developing sustainable, collaborative community–academic research partnerships. The papers offer measures of success through community asset building and highlight the diversity of CBPR as well as evaluation methods for various settings and frameworks.
Acknowledging that CBPR can generate products as diverse as videos, curricula, digital stories and toolkits, PCHP collaborated with the CES4Health.info5 to invite submissions of both manuscripts and products. The products that were peer reviewed and published by CES4Health can be accessed at http://CES4Health.info
Our authors all highlight critical issues and dynamics of partnership development and focus on applying innovative and creative approaches to improve community engagement and participation in health research. Mason et al. detail community perspectives on CBPR capacity building, in “I Know What CBPR Is, Now What Do I Do?” They explore the context of community engagement within the research and/or evaluation process, including the dynamics of social, behavioral, community, and organizational roles. We chose to interview these authors in PCHP’s podcast. Addressing conflict and building trust, Allen et al. describe how to promote community perspectives and to document and address partnership benefits as they discuss the developmental stages of a community–university partnership, borrowing from Erik Erikson’s eight-stage model of individual development from infancy to maturity.
The manuscripts by Edelman et al. and Dearlove et al. present their experience through identifying shared language and values between communities and the academy that contribute to facilitating knowledge and the practice of research and evaluation. The recurring issue of creating equity in CBPR approaches is explored by Black et al., with discussion of equalizing the partnership by providing just compensation and developing shared values and priorities. This team sought to leverage the expertise of the community partners as “added value,” thereby laying the framework for justifiable compensation. They created a process for engaging the community members as experts on the research team and provided reasonable reimbursement for their work alongside academic partners. This article contributes an important new dimension to the literature and practice of CBPR and partnerships. The authors discuss the challenges and lessons learned in implementing a design where valuing community expertise not only shifts power, but balances power in a partnership that grounds the research in the priorities, collaboration, and inclusion of the community it seeks to support.
“Creating a Community–Physical Therapy Partnership to Increase Physical Activity in Urban African American Adults” by Healey et al. describes the development of an ongoing, community–physical therapy school partnership, which aims to improve the health of African American community members and engage physical therapy students in CBPR. The authors share that working collaboratively with community partners to gain knowledge of community needs builds trust, deeper engagement, and reliance that can strengthen the community and improve health. By engaging health professional students in the project as service providers, they created a powerful learning experience in understanding and respecting the social, economic, and environmental context that can improve health outcomes in underserved communities. They benefited from a strong, well-established, and deeply rooted Chicago neighborhood organization and a partnership that evolved over time.
The community perspective of an Oregon rural health coalition is described by Davis et al. as an ideal starting point for rural, bidirectional research partnerships. The authors share their insights and the varied perspectives of rural communities in translational research, often missing in peer-reviewed journals. Their study sought to explore the development and roles of partners in a rural area and develop context-specific interventions for sustainable health outcomes of the local communities. This group advances a community assets-based approach to creating interventions and achieving identified outcomes. Baquet et al. provide another rural perspective from Maryland.
Under “Theory and Methods,” Rideout et al. describe a process and tools to develop effective engagement and inclusion of multiple voices and interests in a systematic and democratic way. Using the Delphi and Snow Card methods, they engaged their CTSA’s community advisory board and its steering committee to identify shared goals and research priorities and to foster [End Page 232] collaboration between the groups to ensure congruence with community priorities and research projects. The paper documents the process of CBPR where consensus building and inclusion of partners’ values, priorities, and experiences led to a productive partnership focused on reducing health disparities.
An ambitious project in The Bronx, “The Development of the Bronx Community Research Review Board,” is described by Martin del Campo et al. as a pilot project to test the feasibility of independent community input and review of academic research. The article details the recruitment and training of community residents to review research and their early experience interacting with researchers, as well as the inherent challenges of this undertaking. To further articulate the community’s voice, Joann Casado, a guest editor and co-founder of the Bronx Board, provides an added personal perspective in her accompanying commentary.
Building the capacity of community-based organization leaders to engage in research was a priority of a New York CTSA. Goytia et al. describe a collaborative approach to designing a web-based and in-person training and educational model for community-based organizations. The aim is to help leaders to understand basic research methods and to engage in developing their own research project with the assistance of academics affiliated with a CTSA.
The findings published in this special issue of PCHP are important to document and disseminate. To set a more inclusive research agenda, design effective interventions, and improve community health, it is essential for community-based organizations, community leaders, and academics to engage in partnerships that are collaborative, ethical, inclusive, transparent, and effective. The goal is to implement and maintain a multidirectional, co-learning process that effectively involves, compensates, and acknowledges the assets and expertise of all partners.
The issues of power and equity may seem intractable, but they can be addressed when partners have earned each other’s trust, commitment, and goodwill. Achieving this longer term objective requires government funding agencies and foundations to develop standards for ethical community engagement for institutions that receive public and philanthropic funds to conduct health research. If we are to achieve the goal of health equity, we need to create systemic change in research protocols and attitudes regarding sharing of resources with neighborhood groups and residents with whom universities and institutions share their community environments and common futures.
This special issue of Progress in Community Health Partnerships was made possible by an administrative supplement to a grant to the Einstein-Montefiore Institute for Clinical and Translational Research from the National Institutes of Health’s National Center for Research Resources, entitled “Building Health Research Capacity in CTSA Community Partners,” Grant Number: 3UL1RR025750-04S2.
* The CTSA program of the National Institutes of Health provides infrastructure support to facilitate translational research, to promote the training and career development of translational researchers, and to develop innovative methods and technologies to strengthen translational research. Currently, 61 medical research institutions in 30 states and the District of Columbia participate in the program. Until recently, the program required that each CTSA explicitly include a community engagement component.
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2. Kawachi I, Berkman LF. Introduction. In: Kawachi I, Berkman LF, editors. Neighborhoods and health. New York: Oxford University Press; 2003.
3. Lynn FM, Busenberg GJ. Citizen advisory committees in environmental policy: What we know, what’s left. Risk Anal. 1995;15:147–62.
4. Minkler M, Wallerstein N. Introduction to community based participatory research. In: Minkler M, Wallerstein N, editors. Community-based participatory research for health. San Francisco: Jossey-Bass; 2003.
5. Jordan C, Seifer SD, Gelmon SB, Ryan K, McGinley p. CES4Health.info: An online tool for peer reviewed publication and dissemination of diverse products of community-engaged scholarship. Prog Community Health Partnersh. 2011;2:189–9. [End Page 233]