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Rethinking Race and Ethnicity in Biomedical Research (2025)

Chapter: Appendix B: Community Engagement Continuum Table

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Previous Chapter: Appendix A: Study Approach and Methods

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Suggested Citation: "Appendix B: Community Engagement Continuum Table." National Academies of Sciences, Engineering, and Medicine. 2025. Rethinking Race and Ethnicity in Biomedical Research. Washington, DC: The National Academies Press. doi: 10.17226/27913.

Appendix B

Community Engagement Continuum Table

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TABLE B-1 The Community Engagement Continuum: An Extended Comparison of Levels of Engagement Moving from left to right across the levels of engagement, the investment required increases. Similarly, sound communication between researchers and community members will also increase.

	Outreach	Consult	Involve	Collaborate	Shared Leadership
Definition	Interaction with the community where information flows from a researcher or research entity to the community	An information-seeking practice that incorporates community input about research or intervention design, implementation, or dissemination in the decision-making process	The involvement of multiple interested parties by researchers toward achieving goals established by the researcher	The formation of partnerships between researchers and other interested parties to achieve a common goal	Consensus-driven research process based on a strong system of relationships, reciprocity and trust
Goal	To disseminate information by communicating and informing; can be the first step toward additional relationship building	To inform communities about research proposals or results, listen to community members’ opinions and needs, and use the feedback to inform decision making	To create community buy-in, community participation, and community ownership; facilitate trust building and community acceptance; and improve outcomes through interventions tailored to community needs	To work together on accomplishing a mutually agreed upon research goal	To work together as equals on accomplishing a mutually agreed upon research goal Shared leadership leads to collective ownership of a problem and its solution. With shared ownership comes increased responsibility, accountability, power, and diversity of strategies. It acknowledges that the researcher is not the only expert for a given project; engaging different voices is critical to the success of certain projects.

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Governance (decision making)	The holder of information	Researcher informs the community about proposals that affect new or existing systems and interventions. Researcher establishes the mechanisms and methods for soliciting feedback from the community. Researchers consider input from community members when making decisions.	The community’s input informs decision making made by researchers	Gain consensus between external partners and researchers, ensuring decisions are mutual	Interested parties represented equally in the partnership Consensus-driven, equally shared decision making Shared planning and accountability Shared responsibility for outcomes Participatory evaluation
Extent of community involvement in research	The community passively receives information	The information received by the community and community input is limited to the specific research questions asked by the research	Community involved or participates	Community collaborates	Strong bidirectional relationship
Communication flow	Unidirectional to the community	To community and back	Bidirectional	Bidirectional	Bidirectional Requires the establishment and maintenance of systems for transparency and consistent, rigorous, open dialogue Ensures communication across all levels of the partnership Relies on a variety of communication approaches

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	Outreach	Consult	Involve	Collaborate	Shared Leadership
Objective	Researcher provides community with information	Get information/feedback from community	Involve more participation from community on issues	Form partnerships with community on each aspect of project from development to solution	Final decision making is at the community level
Entity relationship	Co-exist	Share information	Cooperation	Collaborative	Equal partnership and shared structures and governance
Outcomes	To establish and use communication and outreach channels	Develop connections	Visibility of partnership established	Partnership and trust building	Strong trust; broader health outcomes affecting the community
Examples for use of race and ethnicity	Researcher provides community participants with information about why race and ethnicity are being collected and how the data will be used	A researcher seeks input from community advisory board on a research proposal to design the protocol for collecting race and ethnicity-related data	A researcher seeks the help of community-led organizations to reach diverse populations for input on a research study of racial or ethnic health disparities	A researcher partners with a community organization to help identify and screen participants for a study about a health issue important to the community	A research team and community work together to identify a health problem important to the population; the community and study team co-design the research aims, protocol, and procedures
Examples of specific research studies or programs	Recruitment of Three Generations of African American Women into Genetics Research (Taylor, 2009)^a: Participants were recruited using methods such as advertisements, presenting to churches, and outreach to HBCU sororities	*NIH All of Us^b:* Research program that supports and recommends that awardees establish community or participant advisory boards to provide input on such issues as recruitment methods and design of promotional messaging and engagement materials	NIH Community Engagement Alliance (CEAL)^c: A research network designed to work with community-based organizations to strengthen partnership through community-engaged research to address racial, ethnic, and socioeconomic health disparities	Jackson Heart Study^d: A 20-year prospective community-based cohort that successfully enrolled 5,306 African American participants by mobilizing community support and engagement through partnerships	Wisconsin Alzheimer’s Institute^e: Organization committed to health equity for people living with dementia; primary goal was to support the community; community members initiated their participation in research

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Pros	Allows for relatively quick, broad dissemination of public health information Potential for subsequent relationship building and networking Less costly approach to establishing community engagement Expedient, limited deliberation, information is controlled	Gives researchers a platform to solicit community input during decision making Communities afforded influence as local experts Builds trust between researchers and community Teaches researchers about community norms Increases cultural sensitivity and humility Holds researchers accountable to community for suggestions that were incorporated or excluded Dialogue fosters transparency Researcher perceived as an expert or leader in the community	Community involvement increases the changes that research can affect better public health outcomes	Increased commitment from community partners—in the form of time or other resources—is needed over time to foster a collaborative relationship	Builds long-lasting relationships that can extend beyond the initial goals and scope of the project Can create organizational structures that go beyond the research project and into the community These structures can then facilitate the sustainability of the initiative
Cons	Does not offer higher levels of engagement Limited public/community input or influence	Potentially extends research timelines May require additional resources to collect, analyze, and disseminate community input	Requires time, effort from community members	More labor intensive for health department staff Relinquishing power to community partners can be difficult	Takes time, consistency, flexibility, and focus Better suited for broader issues that people of varying skill levels and interests can participate in

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	Outreach	Consult	Involve	Collaborate	Shared Leadership
	Limited by the networks accessible to the researchers and communities perceived as accessible or priority Could be perceived as impersonal or intrusive	If feedback is not incorporated in final decisions, it could expose researcher to criticism Requires increased sensitivity about public messaging and media coverage Researcher must continually reach out beyond existing partners. If not, consulting is considered a rounding up of the “usual suspects” without reaching a deeper level of engagement		Authentic community engagement will require this in certain situations Less control of the process means researchers must accept unknown outcomes	Government agency participation often requires extensive review and approval Community processes can be complex and labor-intensive, and they require dedicated resources such as time, funding, and people with the necessary skills
Methods	Information and public health materials distributed via email lists, mailing lists, phone calls; through direct community visits and presentations; at community events and meetings, public announcements, listening sessions or media interviews	Surveys, questionnaires, facilitated discussions, focus groups, interviews, social media engagement, email blasts, websites, SMS mobile, community input sessions, advisory boards, community driven information dissemination (newsletters, etc.)	Involve interested parties to obtain feedback or input on research	Interested parties and partners share the responsibility with researchers for achieving the goals	Create a common agenda and research aims Establish shared framework for performance measurement Maintain continuous communication Provide “backbone” support, such as providing staff to create meeting agendas, take minutes, keep track of key documents

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Best practice considerations

Use existing networks to expand outreach
Work to understand cultural norms of communities targeted for outreach
Partner with localized entities familiar with and accessible to target audience

Appropriate representation of target populations
Community-based participatory approaches
Community input sessions
Neighborhood planning sessions

Acknowledge the effort required by community participants and partners and fair reimbursement of effort and travel expenses such as parking, tolls, mileage

Consistent communication and transparency and honesty about the research process and goals
Inclusive: involve collaborators as early in the research planning process as possible
Engage a diverse spectrum of community partners (depending on the nature of the research, some examples include government agencies, community-based organizations, faith-based organizations, private-sector businesses)

Researcher remains flexible about how the shared leadership group identifies the problem and develops solutions
Researcher ensures partners have knowledge and resources needed for shared leadership
Research support data needs and other infrastructure needed for shared decision making
Be explicit about who is sharing leadership
Establish clear governance structure
Hold all parties accountable
Build relationships outside your networks
Take advantage of emergent opportunities
Prioritize and build on early wins to create and nurture structures, processes and relationships that will carry forward into future work

^a Taylor, J. Y. 2009. Recruitment of three generations of African American women into genetics research. Journal of Transcultural Nursing 20(2):219–226.

^b See https://allofus.nih.gov/about/who-we-are/all-us-community-and-participant-advisory-boards (accessed November 20, 2024).

^c See https://ceal.nih.gov/ (accessed November 20, 2024).

^d See https://www.jacksonheartstudy.org/Community/Ways-to-Participate (accessed November 20, 2024).

^e See https://wai.wisc.edu/ (accessed November 20, 2024).

NOTES: This table is a general guide, and there may be other considerations for specific populations. For example, engaging with American Indian Tribes may involve different steps. HBCU = historically black colleges and universities.

SOURCE: Adapted from the CDC Principles and NYC Department of Health and Mental Hygiene guides.