A Systematic Review of Community Engagement in the US Environmental Protection Agency's Extramural Research Solicitations: Implications for Research Funders.

OBJECTIVES: We systematically reviewed the Environmental Protection Agency, National Center for Environmental Research's (NCER's) requests for applications (RFAs) and identified strategies that NCER and other funders can take to bolster community engagement. METHODS: We queried NCER's publically available online archive of funding opportunities from fiscal years 1997 to 2013. From an initial list of 211 RFAs that met our inclusion criteria, 33 discussed or incorporated elements of community engagement. We examined these RFAs along 6 dimensions and the degree of alignments between them. RESULTS: We found changes over time in the number of RFAs that included community engagement, variations in how community engagement is defined and expected, inconsistencies between application requirements and peer review criteria, and the inclusion of mechanisms supporting community engagement in research. CONCLUSIONS: The results inform a systematic approach to developing RFAs that support community engagement in research.

Community-Based Review of Research Across Diverse Community Contexts: Key Characteristics, Critical Issues, and Future Directions.

A growing number of community-based organizations and community-academic partnerships are implementing processes to determine whether and how health research is conducted in their communities. These community-based research review processes (CRPs) can provide individual and community-level ethics protections, enhance the cultural relevance of study designs and competence of researchers, build community and academic research capacity, and shape research agendas that benefit diverse communities. To better understand how they are organized and function, representatives of 9 CRPs from across the United States convened in 2012 for a working meeting. In this article, we articulated and analyzed the models presented, offered guidance to communities that seek to establish a CRP, and made recommendations for future research, practice, and policy.

Community engagement in the CTSA program: stakeholder responses from a national Delphi process.

In response to the Institute of Medicine (IOM) Committee's December 2012 public request for stakeholder input on the Clinical and Translational Science Award (CTSA) program, two nonprofit organizations, the Center for Community Health Education Research and Service, Inc. (CCHERS) and Community-Campus Partnerships for Health (CCPH), solicited feedback from CTSA stakeholders using the Delphi method. Academic and community stakeholders were invited to participate in the Delphi, which is an exploratory method used for group consensus building. Six questions posed by the IOM Committee to an invited panel on community engagement were electronically sent to stakeholders. In Round 1 stakeholder responses were coded thematically and then tallied. Round 2 asked stakeholders to state their level of agreement with each of the themes using a Likert scale. Finally, in Round 3 the group was asked to rank the Round 2 based on potential impact for the CTSA program and implementation feasibility. The benefits of community engagement in clinical and translational research as well as the need to integrate community engagement across all components of the CTSA program were common themes. Respondents expressed skepticism as to the feasibility of strengthening CTSA community engagement.

Community needs, concerns, and perceptions about health research: findings from the clinical and translational science award sentinel network.

OBJECTIVES: We used results generated from the first study of the National Institutes of Health Sentinel Network to understand health concerns and perceptions of research among underrepresented groups such as women, the elderly, racial/ethnic groups, and rural populations. METHODS: Investigators at 5 Sentinel Network sites and 2 community-focused national organizations developed a common assessment tool used by community health workers to assess research perceptions, health concerns, and conditions. RESULTS: Among 5979 individuals assessed, the top 5 health concerns were hypertension, diabetes, cancer, weight, and heart problems; hypertension was the most common self-reported condition. Levels of interest in research participation ranged from 70.1% among those in the "other" racial/ethnic category to 91.0% among African Americans. Overall, African Americans were more likely than members of other racial/ethnic groups to be interested in studies requiring blood samples (82.6%), genetic samples (76.9%), or medical records (77.2%); staying overnight in a hospital (70.5%); and use of medical equipment (75.4%). CONCLUSIONS: Top health concerns were consistent across geographic areas. African Americans reported more willingness to participate in research even if it required blood samples or genetic testing.

Uncovering the benefits of participatory research: implications of a realist review for health research and practice.

CONTEXT: Participatory research (PR) is the co-construction of research through partnerships between researchers and people affected by and/or responsible for action on the issues under study. Evaluating the benefits of PR is challenging for a number of reasons: the research topics, methods, and study designs are heterogeneous; the extent of collaborative involvement may vary over the duration of a project and from one project to the next; and partnership activities may generate a complex array of both short- and long-term outcomes. METHODS: Our review team consisted of a collaboration among researchers and decision makers in public health, research funding, ethics review, and community-engaged scholarship. We identified, selected, and appraised a large-variety sample of primary studies describing PR partnerships, and in each stage, two team members independently reviewed and coded the literature. We used key realist review concepts (middle-range theory, demi-regularity, and context-mechanism-outcome configurations [CMO]) to analyze and synthesize the data, using the PR partnership as the main unit of analysis. FINDINGS: From 7,167 abstracts and 591 full-text papers, we distilled for synthesis a final sample of twenty-three PR partnerships described in 276 publications. The link between process and outcome in these partnerships was best explained using the middle-range theory of partnership synergy, which demonstrates how PR can (1) ensure culturally and logistically appropriate research, (2) enhance recruitment capacity, (3) generate professional capacity and competence in stakeholder groups, (4) result in productive conflicts followed by useful negotiation, (5) increase the quality of outputs and outcomes over time, (6) increase the sustainability of project goals beyond funded time frames and during gaps in external funding, and (7) create system changes and new unanticipated projects and activities. Negative examples illustrated why these outcomes were not a guaranteed product of PR partnerships but were contingent on key aspects of context. CONCLUSIONS: We used a realist approach to embrace the heterogeneity and complexity of the PR literature. This theory-driven synthesis identified mechanisms by which PR may add value to the research process. Using the middle-range theory of partnership synergy, our review confirmed findings from previous PR reviews, documented and explained some negative outcomes, and generated new insights into the benefits of PR regarding conflicts and negotiation between stakeholders, program sustainability and advancement, unanticipated project activity, and the generation of systemic change.

Relationships between community-based processes for research ethics review and institution-based IRBs: a national study.

Community groups are implementing research ethics review processes to determine whether and how research is conducted in their communities. We report on a survey of 109 of these community-based review processes about their relationships with institution based research ethics boards (I-REBs). Ninety-two percent reported that studies they review were also reviewed by an I-REB. Over half characterized their relationship with I-REBs positively. Those with positive relationships were significantly more likely to communicate with the involved I-REBs. Challenges when working with I-REBs included delays, communication problems, and lack of I-REB understanding of community-based participatory research. Strengthening relationships between community-based review processes and I-REBs could ultimately enhance reviews of community-engaged research.

CES4Health.info: an online tool for peer reviewed publication and dissemination of diverse products of community-engaged scholarship.

Community-engaged scholarship (CES)-research, teaching, programmatic and other scholarly activities conducted through partnerships between academic and community partners-may result in innovative applied products such as manuals, policy briefs, curricula, videos, toolkits, and websites. Without accepted mechanisms for peer-reviewed publication and dissemination, these products often do not "count" toward faculty promotion and tenure (P&T) and have limited opportunities for broad impact. This paper reports on CES4Health.info, a unique online tool for peer-reviewed publication and dissemination of products of CES in forms other than journal articles. In its first year, CES4Health.info has published 24 products and documented the satisfaction of users, authors, and reviewers.

Assessing the outcomes of participatory research: protocol for identifying, selecting, appraising and synthesizing the literature for realist review.

BACKGROUND: Participatory Research (PR) entails the co-governance of research by academic researchers and end-users. End-users are those who are affected by issues under study (e.g., community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (e.g., clinicians, community leaders, health managers, patients, and policy makers). Systematic reviews assessing the generalizable benefits of PR must address: the diversity of research topics, methods, and intervention designs that involve a PR approach; varying degrees of end-user involvement in research co-governance, both within and between projects; and the complexity of outcomes arising from long-term partnerships. METHODS: We addressed the above mentioned challenges by adapting realist review methodology to PR assessment, specifically by developing inductively-driven identification, selection, appraisal, and synthesis procedures. This approach allowed us to address the non-uniformity and complexity of the PR literature. Each stage of the review involved two independent reviewers and followed a reproducible, systematic coding and retention procedure. Retained studies were completed participatory health interventions, demonstrated high levels of participation by non-academic stakeholders (i.e., excluding studies in which end-users were not involved in co-governing throughout the stages of research) and contained detailed descriptions of the participatory process and context. Retained sets are being mapped and analyzed using realist review methods. RESULTS: The librarian-guided search string yielded 7,167 citations. A total of 594 citations were retained after the identification process. Eighty-three papers remained after selection. Principle Investigators (PIs) were contacted to solicit all companion papers. Twenty-three sets of papers (23 PR studies), comprising 276 publications, passed appraisal and are being synthesized using realist review methods. DISCUSSION: The systematic and stage-based procedure addressed challenges to PR assessment and generated our robust understanding of complex and heterogeneous PR practices. To date, realist reviews have focussed on evaluations of relatively uniform interventions. In contrast our PR search yielded a wide diversity of partnerships and research topics. We therefore developed tools to achieve conceptual clarity on the PR field, as a beneficial precursor to our theoretically-driven synthesis using realist methods. Findings from the ongoing review will be provided in forthcoming publications.

Understanding community-based processes for research ethics review: a national study.

OBJECTIVES: Institutional review boards (IRBs), designed to protect individual study participants, do not routinely assess community consent, risks, and benefits. Community groups are establishing ethics review processes to determine whether and how research is conducted in their communities. To strengthen the ethics review of community-engaged research, we sought to identify and describe these processes. METHODS: In 2008 we conducted an online survey of US-based community groups and community-institutional partnerships involved in human-participants research. We identified 109 respondents who met participation criteria and had ethics review processes in place. RESULTS: The respondents' processes mainly functioned through community-institutional partnerships, community-based organizations, community health centers, and tribal organizations. These processes had been created primarily to ensure that the involved communities were engaged in and directly benefited from research and were protected from research harms. The primary process benefits included giving communities a voice in determining which studies were conducted and ensuring that studies were relevant and feasible, and that they built community capacity. The primary process challenges were the time and resources needed to support the process. CONCLUSIONS: Community-based processes for ethics review consider community-level ethical issues that institution-based IRBs often do not.

Applying community-based participatory research principles and approaches in clinical trials: forging a new model for cancer clinical research.

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.

Community-based participatory research from the margin to the mainstream: are researchers prepared?

Despite an increasing arsenal of effective treatments, there are mounting challenges in developing strategies that prevent and control cardiovascular diseases, and that can be sustained and scaled to meet the needs of those most vulnerable to their impact. Community-based participatory research (CBPR) is an approach to conducting research by equitably partnering researchers and those directly affected by and knowledgeable of the local circumstances that impact health. To inform research design, implementation and dissemination, this approach challenges academic and community partners to invest in team building, share resources, and mutually exchange ideas and expertise. CBPR has led to a deeper understanding of the myriad factors influencing health and illness, a stream of ideas and innovations, and there are expanding opportunities for funding and academic advancement. To maximize the chance that CBPR will lead to tangible, lasting health benefits for communities, researchers will need to balance rigorous research with routine adoption of its conduct in ways that respectfully, productively and equally involve local partners. If successful, lessons learned should inform policy and inspire structural changes in healthcare systems and in communities.

Service-learning: an integral part of undergraduate public health.

In 2003, the Institute of Medicine (IOM) described public health as "an essential part of the training of citizens," a body of knowledge needed to achieve a public health literate citizenry. To achieve that end, the IOM recommended that "all undergraduates should have access to education in public health." Service-learning, a type of experiential learning, is an effective and appropriate vehicle for teaching public health and developing public health literacy. While relatively new to public health, service-learning has its historical roots in undergraduate education and has been shown to enhance students' understanding of course relevance, change student and faculty attitudes, encourage support for community initiatives, and increase student and faculty volunteerism. Grounded in collaborative relationships, service-learning grows from authentic partnerships between communities and educational institutions. Through emphasizing reciprocal learning and reflective practice, service-learning helps students develop skills needed to be effective in working with communities and ultimately achieve social change. With public health's enduring focus on social justice, introducing undergraduate students to public health through the vehicle of service-learning as part of introductory public health core courses or public health electives will help ensure that our young people are able to contribute to developing healthy communities, thus achieving the IOM's vision.

Introduction to special issue: advancing the ethics of community-based participatory research.

Increasingly communities are engaging in community-based participatory research (CBPR) to address their pressing health concerns, frequently in partnership with institutions. CBPR with its underlying values challenges us to expand the traditional framework of ethical analysis to include community-level and partnership-oriented considerations. This special issue considers ethical considerations inherent in CBPR, presents examples of how communities have created their own processes for research ethics review, and identifies challenges CBPR teams may encounter with institution-based research ethics committees. Drawing upon the special issue articles and the work conducted by Community-Campus Partnerships for Health and the Tuskegee University National Center for Bioethics in Research and Health Care, we propose an approach and a set of strategies to create a system of research ethics review that more fully accounts for individual and community-level considerations.

Building and sustaining community-institutional partnerships for prevention research: findings from a national collaborative.

The Examining Community-Institutional Partnerships for Prevention Research Project began in October 2002 with funding from the Centers for Disease Control and Prevention Research Center Program Office through a cooperative agreement between the Association of Schools of Public Health and the CDC. The three-year project aimed to synthesize knowledge about community-institutional partnerships for prevention research and to build community and institutional capacity for participatory research. These ten organizations collaborated on the project because they were all involved in community-institutional partnerships for prevention research, had access to research and evaluation data on these partnerships, and believed that the shared learning and action that would result through a collaborative effort could significantly advance collective knowledge about partnerships and lead to substantive capacity-building responses: the Community Health Scholars Program, Community-Based Public Health Caucus of the American Public Health Association, Community-Campus Partnerships for Health, Detroit Community-Academic Urban Research Center, Harlem Health Promotion Center, National Community Committee of the CDC Prevention Research Centers Program, New York Urban Research Center, Seattle Partners for Healthy Communities, Yale-Griffin Prevention Research Center and the Wellesley Institute. This paper reports on the project's findings, including common characteristics of successful partnerships and recommendations for strengthening emerging and established partnerships.