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• Am J Public Health
• v.100(8); Aug 2010

Community Engagement in Research: Frameworks for Education and Peer Review

Both authors conceptualized, wrote, and edited the article.

Community engagement in research may enhance a community's ability to address its own health needs and health disparities issues while ensuring that researchers understand community priorities. However, there are researchers with limited understanding of and experience with effective methods of engaging communities. Furthermore, limited guidance is available for peer-review panels on evaluating proposals for research that engages communities.

The National Institutes of Health Director's Council of Public Representatives developed a community engagement framework that includes values, strategies to operationalize each value, and potential outcomes of their use, as well as a peer-review framework for evaluating research that engages communities.

Use of these frameworks for educating researchers to create and sustain authentic community–academic partnerships will increase accountability and equality between the partners.

THE SIGNIFICANT RENAISSANCE of community engagement in research stems from demands by community leaders, policymakers, and funders for meaningful community involvement to address health problems facing communities. The published peer-reviewed literature and numerous reports point to the many potential benefits of community engagement in research. 1 – 16 According to the Institute of Medicine, for example, community-based participatory research increases community understanding of the issues under study and enhances researchers' ability to understand community priorities, the importance of addressing community priorities, and the need for culturally sensitive communications and research approaches. 17

Several models for community engagement in research exist, including community-based participatory research, 18 , 19 empowerment evaluation, 20 , 21 participatory or community action research, 22 and participatory rapid appraisal. 23 Some confusion exists about the definition of community engagement in research, however, because many researchers use the terms interchangeably.

Researchers conducting community engagement in research need appropriate education and training not typically offered by traditional doctoral and master's level curricula. The field clearly needs long-term programs that integrate the knowledge and skills of experienced community and researcher partners in high-quality participatory research to build the capacity of young and traditionally trained researchers and scientists interested in pursuing community engagement in research. 24

Funding agencies often find it difficult to assess participatory research proposals, especially if they use traditional review criteria that are not necessarily applicable to participatory research. 25 A 2004 review 26 points out that when reviewers in typical study sections are not familiar with community-based participatory research or are even skeptical about the approach's merits, investigators find it challenging to obtain funding for their community-based participatory research projects through conventional peer-review mechanisms.

Many funders include members of the lay public in their peer-review panels to evaluate proposals from the patient's or family member's perspective. 27 , 28 Lay public reviewers help scientists understand the impact of the research on the community and help them make appropriate funding recommendations that address the needs and concerns of patients, health care providers, and family members. 29 However, many scientists are concerned that lay peer reviewers do not have the scientific expertise required to offer an appropriate evaluation. 30 , 31 A survey of the National Cancer Institute of Canada's scientific grant review panel members found that not all scientists value lay contributions and many lay members feel insecure about the importance of their contributions. 32

Because of these barriers, community engagement in research is probably underused. The National Institutes of Health (NIH) Director's Council of Public Representatives (COPR), a federal advisory committee to the NIH director, addressed these issues and produced this article to advance community engagement in research. We describe approaches that funders and educational institutions can use to develop community engagement in research training programs and peer-review processes that can expand the community engagement in research field.

COMMUNITY ENGAGEMENT IN RESEARCH AT THE NIH

Many of NIH's 27 institutes and centers encourage some investigators to engage the public in their research. For example, NIH sponsored the Partners in Research Program, which supports partnerships between academic or scientific institutions and community organizations to study methods for improving public understanding of research and enhance outreach to the public by scientists. 33

Several NIH institutes and centers, particularly institutes with large clinical research portfolios, offer training in community engagement for NIH-sponsored investigators. 34 , 35 However, NIH has no centralized training programs dedicated to enhancing researcher or community skills in community engagement in research.

Although NIH-sponsored investigators are not required to include community members in clinical research, except as research participants, some NIH institutes and centers encourage community participation in some of their programs. The NIH has no centralized policy, however, requiring the involvement of communities in NIH-funded clinical research when community engagement is relevant to the study.

The NIH sometimes creates a special emphasis panel or an ad hoc committee to review applications submitted in response to a request for applications or a very specific research topic. 26 These reviewers are typically experts in the request for applications focus area and receive specific instructions related to the proposals that they are asked to review. The NIH also includes public representatives in some of its peer-review panels.

Several NIH institutes and centers have developed special review criteria for proposals involving community participation in research. For example, reviewers of the Clinical and Translational Science Award proposals are asked to consider whether the centers will effectively involve the Clinical and Translational Science Award's community in “clinical and translational research priority setting, participation, and follow-up.” 36

In 2007, NIH initiated a formal review of its peer-review system. The final draft of the 2007–2008 Peer Review Self-Study for NIH included “continue piloting the use of patients and their advocates in clinical research review” as one recommended action to enhance reviewer quality. 37

THE ROLE OF COPR IN COMMUNITY ENGAGEMENT IN RESEARCH

The NIH Director's Council of Public Representatives consists of 21 members of the public who advise, recommend, and consult with the NIH director on medical research, NIH policies, and programs that involve the public. This group has a deep interest in community engagement in research, as illustrated by the 2004 workshop, “Inviting Public Participation in Clinical Research: Building Trust Through Partnerships,” that COPR sponsored in partnership with the NIH Public Trust Initiative. The council issued the workshop proceedings and a report with recommendations. 38 , 39 In addition, two COPR members, Marjorie Mau, MD, and Syed Ahmed, MD, DrPH (one of the coauthors of this article), were members of the Working Group of the Advisory Committee to the NIH Director on NIH Peer Review.

In discussions with former NIH Director Elias Zerhouni, MD, COPR emphasized the importance of participation in research and recommended that the NIH adopt a fourth “P,” for “participation,” in NIH's vision of medicine as being “more Predictive, Personalized, Preemptive, and Participatory.” 40 The council went further to establish the Role of the Public in Research work group to explore how to operationalize the fourth “P” and address concerns about community engagement in research by producing the following deliverables:

• Definitions and operating principles of “community engagement” and “public participation,”
• Guidelines for educating researchers and the lay public on community engagement, and
• Criteria and guidance that peer-review panels can use to gauge community engagement.

We present COPR's three deliverables.

COPR FRAMEWORKS FOR COMMUNITY ENGAGEMENT IN RESEARCH EDUCATION AND PEER REVIEW

The Role of the Public Work Group was formed in 2006 to produce COPR's community engagement in research deliverables. The work group included approximately 10 COPR members who volunteered to join the group because of their experience as academic or community partners in research or because of a strong interest in community engagement in research.

COPR's Methodology

The work group explored the value of public participation in research in 2006 through 2008. The group invited community and academic experts representing many sectors in community engagement, public participation in research, grant administration, training, peer review, ethics, and community-based research to meet with the work group. At these meetings, the work group learned, for example, that understanding a community's social and cultural characteristics, as identified by community members, improves research quality, ensures the research's relevance, addresses health disparities, and enhances the research's impact. However, presenters and members identified several concerns, including limited researcher understanding of public participation in research's value, limited researcher experience in this area, and limited guidance for peer-review panels on evaluating community engagement proposals.

The work group conducted a very broad search of PubMed and the Internet using many search terms (such as “participatory action research,” “peer review,” “partnership,” and “collaboration”) and combinations of these terms. This search generated approximately 650 peer-reviewed journal articles, reports from government agencies and nonprofit organizations, course and curriculum descriptions, bibliographies, and Web sites from around the world.

The work group produced initial drafts of its deliverables based on its internal discussions in 2007 and 2008 (including four face-to-face meetings and many teleconferences), discussions with invited experts, COPR's previous reports on public trust and human participants in research, and literature search results. Specifically, the work group reviewed definitions of “community engagement” 41 – 55 and “public participation” 56 , 57 created by NIH and other experts to produce the first deliverable. The group developed the second and third deliverables by identifying relevant strategies for educating researchers and criteria for peer review of community engagement in research proposals from the literature. The group refined these strategies and criteria by combining or eliminating some and revising others to produce the frameworks.

Work group members reviewed and presented drafts of each deliverable to the full COPR before the committee's approval of the final version. In October 2008, COPR presented its frameworks to Raynard Kington, MD, PhD, acting director and deputy director of NIH. He accepted the frameworks on behalf of NIH and recommended that NIH form an internal work group to implement the framework. The work group cochairs subsequently developed the current article, with input from the entire COPR, to present the frameworks and describe the methods used to develop them.

Public Participation

Public participation is based on the belief that those who are affected by a decision have a right to be involved in the decision-making process. 58 , 59 Public participation is the process by which an organization consults with interested or affected individuals, organizations, and government entities before making a decision. Public participation is a two-way communication and collaborative problem-solving process with the goal of achieving better and more acceptable decisions.

Community Engagement

Community engagement in research is a process of inclusive participation that supports mutual respect of values, strategies, and actions for authentic partnership of people affiliated with or self-identified by geographic proximity, special interest, or similar situations to address issues affecting the well-being of the community of focus. 45 , 48 , 60 , 61

Community engagement is a core element of any research effort involving communities. It requires academic members to become part of the community and community members to become part of the research team, creating a unique working and learning environment before, during, and after the research.

Operating Principle

Community engagement is a process that requires power sharing, maintenance of equity, and flexibility in pursuing goals, methods, and time frames to fit the priorities, needs, and capacities within the cultural context of communities. Community engagement in research is often operationalized in the form of partnerships, collaboratives, and coalitions that do the following: help mobilize resources and influence systems, change relationships among partners, and serve as catalysts for changing policies, programs, and practices.

Core Principles for Education on Community Engagement in Research

The NIH Director's Council of Public Representatives' framework for education on community engagement in research targets investigators and communities. The framework is built on 5 core principles. Corresponding values are listed in Table 1 .

Values, Strategies, and Outcomes of Community Engagement in Research (CER)

Note. COPR=National Institutes of Health Director's Council of Public Representatives.

Definition and scope of community engagement in research (values 1 and 5).

Community and academic partners need to understand the definition of “community” and what community engagement involves in their program. New investigators should understand the community engagement activity and communities and academic partners must identify the project's goals, which should be based on a relevant community issue.

Strong community–academic partnership (values 2 and 8).

Successful partnerships are based on a mutual understanding of partners' needs, capacities, and goals. Developing a partnership takes time, skill, and mutual respect. A formal agreement is helpful but not sufficient because relationships must extend beyond legal documents.

Equitable power and responsibility (values 3 and 4).

Community engagement projects can involve community partners in all aspects of the research process, recognizing that both community and academic partners bring expertise. Depending on available expertise, infrastructure support, and interest levels, partners should take responsibility for advancing different research aspects. This creates mutual respect, willingness to share power, and accountability for each project aspect. Community engagement projects encourage, instead of merely tolerating, diverse populations and perspectives.

Capacity building (values 6, 7, and 13).

Community and academic partners share resources and funding. Communities increase their capacity to address their health issues by learning about different aspects of the research process. Academics increase their own capacity to conduct community engagement research, enhance the authenticity of their data, and obtain assistance in recruiting and retaining research participants.

Effective dissemination plan (values 9, 10, 11, and 12).

Bidirectional, continuous communication keeps community engagement projects moving. Transparency in all activities builds trust and both partners must own all data gathered. Partners must make joint decisions on disseminating their research results. The translation of findings into policies or programs must be based on the research project's agreed-upon goals.

Framework for Education on Community Engagement in Research

The first framework ( Table 1 ) describes 13 values that are relevant to community engagement and identifies strategies to operationalize each value and potential outcomes from those strategies. The process for training researchers in community engagement should be based on the five principles and the framework.

Framework for Peer Review of Community Engagement Proposals

Table 2 provides suggested criteria for reviewers to use as a framework when they are reviewing proposals involving community engagement as a key component of the research. Principal investigators might come from an academic institution, whereas coinvestigators might come from an academic institution or a community organization. This table addresses both types of investigators because an effective arrangement is one in which community engagement research projects are led by a team of academic and community partners as coinvestigators.

Criteria for Applications for Research Involving Communities

The NIH Director's Council of Public Representatives developed its frameworks for community engagement in research after reviewing its previous reports on human participants and public trust in research, meeting with experts in a range of related fields, and conducting an extensive review of published and unpublished literature. The council's research results highlight the importance of educating investigators and communities on how to engage communities in research and ensuring that reviewers are familiar with the principles of community engagement in research and understand the value of this approach. In addition, COPR recognizes that the frameworks should be evaluated and the results used to refine the frameworks and increase their utility.

By incorporating the frameworks presented in this article, NIH, other funders, researchers, and communities will help expand the cadre of researchers who are well prepared to form authentic partnerships with communities and ensure that proposals for community engagement research receive a fair and appropriate review. We hope that this will increase the amount of high-quality community engagement research that researchers and communities conduct and that NIH supports. This will, in turn, have a positive impact on the health of communities.

Acknowledgments

Both authors acknowledge the current and former Council of Public Representatives (COPR) members for their participation, suggestions, and comments throughout the process: Naomi Cottoms, MS Arkansas; Craig Beam, BA, and James S. Wong, PhD, California; Brent M. Jaquet, BA, and Michael Manganiello, MPA, Washington, DC; Nicole Johnson, MA, MPH, and John W. Walsh, BS, Florida; Carlos A. O. Pavão, BA, MPA, Georgia; Marjorie Mau, MD, MS, Hawaii; Micah L. Berman, JD, and Elmer R. Freeman, MSW, Massachusetts; Christina Clark, MA, MBA, Michigan; Valda Boyd Ford, MPH, MS, RN, and Beth Furlong, PhD, JD, RN, Nebraska; Lora M. Church, BS, New Mexico; Wendy Chaite, Esq, Matthew Margo, LLM, and James H. Wendorf, MA, New York; Cynthia Lindquist Mala, PhD, MPA, North Dakota; Nicolas Linares-Orama, PhD, Puerto Rico; Rep Eileen Naughton, JD, Rhode Island; Linda Crew-McNamara, MBA, RN, South Carolina; and Anne Muñoz-Furlong, BA, Virginia. The authors also gratefully acknowledge the assistance of Debby Berlyne, PhD, with this article. In addition, the authors thank Kelli L. Carrington, MA, executive secretary, COPR, for her perspective and support to produce this document.

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What does it mean to do research within a community?

Some researchers do studies in a lab. Some do studies in a clinic. Some do studies in hospitals. And some do studies within a community. You might be thinking, what does it mean to do research within a community? What do researchers even mean when they say “community”? Why do they want to do research with a community? How do they learn about communities? These are all great questions! 

“Community” can mean a lot of different things when it comes to research. Researchers think about communities in many different ways. A community could be people who live in the same area. It could be people who are in the same age group (like children, or older adults). It could be people who share the same identities, speak the same languages, work the same jobs, experience the same health issues, join the same social media groups, enjoy doing the same activities…or people who feel connected to each other for any of these reasons, and others!    

Just like there are many different types of communities, there are a lot of reasons why researchers might be interested in doing research with communities. Some researchers want to find out about how people live their lives within their communities to help improve everyday health. Some want to figure out what the most important health issues are in a community. And others want to see if a new program might help make communities healthier.     

How do researchers learn about communities?  

Imagine you just moved to a new town – how would you try to learn about your new home? Would you go to some events? Try to meet new people? Talk to your neighbors? Find groups that do activities you like? Now, if you were a researcher, how would you try to learn about a community you wanted to work with? If your answers seem similar, that’s because…well…they are. When researchers want to learn about communities, the best thing they can do is (you guessed it) get out there! As a researcher tries to learn more about a community, they might go to events, volunteer with community groups, or meet with people who are interested in the same health topics as they are. They might try to find out what research projects are already going on in a community by talking to other researchers. They might try to find out what health topics are most important to community members by looking at community health reports, or maybe even by trying to organize a listening session where community members come and share their thoughts and feelings about a research topic. The more time a researcher can spend learning about a community, the better their research can be! If you see a researcher out in your community before a research project starts, they might be trying to:  

• Build trust and relationships with community members  
• Choose a research topic that the community is interested in  
• Pick a type of study that the community wants to take part in  
• Learn what results community members want to see from the research   
• Figure out what might make it hard for community members to join a research study and what might make it easier  
• Learn if the community wants to help plan, do, or share the research  

How can researchers work with a community on a research project?  

One of the most important things a researcher can learn when they want to work with communities is how much a community wants to help plan, do, and share the research. Sometimes research projects happen  in  communities. Research that happens  in  communities is called  community-based research . You might also think of research as happening  on  communities (research should not feel like it is happening on you!). Well, research can happen  with  communities, too. Working  with  communities on a research project is called  community-engaged research .   

Even though community-engaged research is one type of research, these projects can all look really different. There are many ways to “engage” with communities on a research project. This is why it is so important for researchers to talk with communities about how involved they want to be in planning, doing, and sharing the research. Researchers can work with community members to…  

Researchers can work with communities on one part of a research project (like PLAN), or all parts of a research project (PLAN, DO, and SHARE). And sometimes researchers will work with the same communities on many different research projects! It all depends on the researcher, the study, and what the community wants.  

What if researchers really want to put the community in the driver’s seat?  

Sometimes, when communities are really involved with research, it is called  community-based participatory research or CBPR . In community-based participatory research projects, communities aren’t just doing research  with  a researcher – they are leading the research! Community-based participatory research is done through a true and equal partnership of community members and a researcher or research team. The ideas, research topic, study design…pretty much everything about the research…is driven by community members. They have the power to make decisions about all parts of the study and how the research is done. Community-based participatory research studies usually try to understand big issues impacting communities (maybe something like access to healthcare or poverty within a community) and try to find solutions through policy and social change. This type of research takes a lot of time, strong relationships, and trust between community partners and researchers.    

So, to wrap it all up…      

There are many researchers out there who work with communities on research. Working with communities to do research takes time, trust, and effort – but it makes the research so much better for everyone!   

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