Engaging Communities Across the Whole Research Process
Community engagement often begins with recruitment or data collection. When it starts that late, community members have little opportunity to shape the research question, measures, study design, or definition of a useful outcome.
Engagement across the full research process means community leaders and members help shape the question and design, interpret the findings, and decide how results will be returned to the people who contributed to the work.
This page covers how to do that. For the standards that engagement should meet, see Research Ethics and Community Engagement Principles.
Why engagement should begin early
The question shapes everything that follows. A community asked to recruit for a study of medication adherence might have identified transportation to the pharmacy as the more important problem. That input is most useful before the question and design are fixed.
Measures reflect judgments. Defining a completed referral as success or a missed appointment as failure reflects assumptions about what patients can and should do. People who face the relevant constraints can explain when a measure may give an incomplete or misleading picture.
Local context affects interpretation. A drop in follow-up visits could signal a problem, or it could occur because another site opened closer to patients. Community and program partners may know which explanation is more plausible.
Communities should receive the findings. When people contribute time, data, and trust, the research team should explain what it learned and how the results will be used. Failing to return findings can damage trust and make future work more difficult.
Community input can also improve feasibility, recruitment, retention, and the usefulness of the findings. The effect depends on the quality of the engagement and the study context.
Locate where you actually are
CDC and ATSDR describe engagement as a continuum rather than a yes or no. The third edition of Principles of Community Engagement, published in 2025 with CTSA Program and NIH, sets out five positions.
| Position | What it looks like | Who decides |
|---|---|---|
| Outreach | You inform the community about the work | The research team |
| Consult | You ask for input and consider it | The research team |
| Involve | Community partners participate throughout | The research team, with input |
| Collaborate | Community partners share decisions | Both, by agreement |
| Shared leadership | Community partners hold formal authority | Community and researchers together |
Many projects operate at the outreach or consultation level. Describe the level of engagement accurately, then decide whether the question, risks, and setting call for greater community involvement or shared authority.
Deeper engagement requires sharing decision-making authority. Adding meetings without changing who decides does not move a project along the continuum.
Ways to engage
A community advisory board
A community advisory board is a standing group that meets throughout the project. It is most useful when members are paid, asked to address specific decisions, and told how their input changed the work.
It is less useful when it meets only once, when membership does not reflect the community affected by the research, or when members are asked to review decisions that are already final.
Give the board concrete questions. For example: Which of these outcomes matters most? Would this consent process feel voluntary? Does this description of the finding reflect the community’s experience?
Hiring community members onto the team
Hiring community members as research staff or investigators can bring community knowledge directly into the work when the roles include meaningful responsibility and decision-making.
Community health workers, promotores, outreach staff, and community co-investigators may bring knowledge and relationships that the research team lacks. Define whether their role is limited to carrying out decisions or includes helping make them.
Involve community team members from planning through dissemination when the role calls for it. Participation may include shaping the question, discussing the analysis, interpreting findings, and presenting results to the community.
Budget for training, supervision, and career progression in the same way you would for any other role.
Community engagement studios
A structured consultative session in which community members with relevant lived experience give direct input on a specific research proposal. The model was developed by the Meharry-Vanderbilt Community-Engaged Research Core and has been adopted at other centers.
This approach can work well for programs that cannot sustain a standing board. Community experts are recruited for a focused session, paid, briefed, and asked defined questions about the proposal. The research team listens, records the input, and reports back on what changed.
Ask whether a nearby CTSA hub offers them, since many do.
Working through structures that already exist
Many communities already have resident councils, faith organizations, tribal councils, school parent groups, mutual aid networks, patient groups, and other established structures.
An existing group may offer established relationships, leadership, and meeting structures. Ask whether the group wants to participate, what role it should have, and what support or benefit it expects in return.
Community reviewers and co-authors
Community partners can review the protocol before submission, review community-facing materials, and be named as authors where their contribution meets the criteria. Discuss authorship early, because it is difficult to add someone at the point of submission.
Some funders now include community reviewers on their own panels, which is worth knowing when writing the engagement section of a proposal.
What engagement looks like at each stage
| Stage | Community role |
|---|---|
| Setting the question | Naming the problem worth studying and what would count as a useful answer |
| Design | Judging feasibility, burden, and whether the approach fits how people live |
| Measures | Saying when a measure would mislead, and what is missing |
| Recruitment and consent | Testing whether the invitation reads as voluntary and understandable |
| Data collection | Collecting, hosting, and adapting to conditions on the ground |
| Analysis | Deciding which comparisons matter and which would harm |
| Interpretation | Explaining what a result means locally before it is written up |
| Dissemination | Choosing the formats, settings, and timing for sharing back |
| After the study | Deciding what happens next, and what the data can be used for |
Returning results
Returning aggregate results to participants is an important part of engaged research, but it is often delayed or omitted after analysis, publication, or funding ends.
Plan how results will be returned before the study starts, and include the work in the budget and timeline.
Do more than post a report. A PDF on a website may be useful, but it will not reach everyone who participated. Use direct and community-based ways of sharing the findings as well.
Plan how to reach participants. Ask during consent how people would like to receive aggregate results, when appropriate, and record their preferences using an approved process.
Include interpretation in the process. A data walk is one method. Findings are displayed at stations, small groups move between them, and participants discuss what each result may mean. The discussion gives community members a role in interpreting the data before conclusions are final.
Use familiar and accessible settings. A session connected to an existing gathering, service, or meeting may be easier to attend than a separate event. Options may include community radio, local media, faith settings, and sites the mobile program already visits.
Match the format to the audience. Options include a one-page summary in the languages people use, a short presentation, a visual explanation, or a conversation. More than one format may be needed.
Share unfavorable, mixed, and inconclusive results. Explain the uncertainty, what the study could not answer, and whether the program or research team plans to make changes.
Return findings while they are still useful. Long delays can make results less relevant as programs and communities change. Consider interim updates when they are accurate, appropriate, and allowed by the study plan.
Explain what happened next. Report which decisions the findings informed, what changed, and where no action was taken.
Frequently asked questions
We are a small program. Is a community advisory board realistic?
It may not be. A community engagement studio, regular consultation with an existing organization, or a paid community role may fit the program better than a standing board. Choose a structure the program can support throughout the project.
How much should we pay community partners?
Enough to reflect the role, preparation, time, and responsibility. Ask about payment method and timing, because some approaches create tax, benefit, or banking problems for the person being paid. See Research Ethics and Community Engagement Principles.
What if community priorities do not match the research question?
Take the difference seriously. The team may need to revise the question, identify a shared priority, or decide that the proposed study is not a good fit for the partnership.
Who counts as a community leader?
Community leaders may hold formal roles or have influence through longstanding relationships and trust. Ask staff, patients, and community organizations whom they rely on for guidance, while avoiding the assumption that one person can speak for an entire community.
Does engagement replace IRB review?
No. They do different work. A community advisory board brings local priorities and accountability. An IRB has defined regulatory responsibilities. See IRB for Beginners.
Authoritative resources
- Principles of Community Engagement, Third Edition, CDC and ATSDR
- Community Engagement Studios: A Structured Approach to Obtaining Community Input, Joosten and colleagues
- Data Walks: An Innovative Way to Share Data with Communities, Urban Institute
- Sharing Results for Engaged Research, Harvard Catalyst
- Foundational Expectations for Partnerships in Research, PCORI
Related resources
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