03 · What You Need to Know
Tokenism Is About the Quality of Participation, Not the Number of Meetings
A Community Seat at the Table Is Not Enough
Researchers sometimes measure engagement through visible activities: number of meetings, advisory-board membership, attendance, consultation sessions, or stakeholder workshops. These indicators show that interaction occurred. They do not establish that participation was meaningful.
CIOMS calls for an early and sustained participatory process involving communities in research design, development, implementation, informed-consent planning, monitoring, and dissemination. The 2024 Declaration of Helsinki similarly requires meaningful engagement and states that researchers should enable communities to share priorities and values and participate in research design, implementation, and other relevant activities.
Both formulations point beyond simple presence.
Visible participation
Community members attend meetings, appear on committees, answer consultations, or otherwise participate in engagement activities.
Meaningful participation
Community perspectives are heard under conditions where they can realistically inform appropriate decisions, concerns can be raised, and researchers are accountable for how input is handled.
Engagement Is Tokenistic When the Answer Cannot Matter
One of the clearest warning signs appears when researchers ask for opinions about a decision that has already been made and cannot be reconsidered.
There is nothing inherently wrong with informing people about a fixed decision. Researchers sometimes genuinely have constraints. The problem arises when information-sharing is presented as consultation or co-design.
If a protocol, recruitment plan, intervention, consent procedure, or dissemination strategy is completely closed to revision, researchers should not imply that community members are being invited to shape it.
Not Every Recommendation Has to Be Accepted
A common overcorrection is to assume that meaningful engagement means researchers must implement whatever community representatives request. That would create its own problems.
A recommendation may be scientifically invalid, legally impossible, inconsistent with participant protections, beyond available resources, or opposed by other community groups. Researchers remain responsible for the integrity and ethics of the study.
The relevant test is whether input is genuinely considered, whether researchers can explain their response, and whether the limits of community influence were communicated honestly from the beginning.
Tokenism Often Begins With Who Gets Selected
A research team may repeatedly invite the same articulate, professionally connected, English-speaking, or researcher-friendly individuals because collaboration with them is easy. Over time, these people can become institutionalized as “the community voice.”
They may be excellent contributors. The problem is assuming that their participation makes broader representation unnecessary.
CIOMS emphasizes diversity in community engagement and specifically notes that when community leaders consist only of men, researchers should actively include women’s views. Researchers should similarly examine other forms of underrepresentation relevant to the study.
Meaningful engagement therefore requires attention to differences of interest and power within the community.
A Community Advisory Board Can Still Be Tokenistic
Creating a community advisory board does not solve tokenism by itself. Its composition, mandate, meeting structure, information access, decision-making processes, and relationship with the research team all matter.
NIH community-engagement recommendations emphasize clearly defined roles and responsibilities, community participation in protocol development, ongoing collaboration, and involvement across stages of clinical research. Research on community advisory boards has likewise identified transparency about how input shaped research, shared leadership, inclusive meeting structures, and recognition of experiential knowledge as important to ethical engagement.
A board whose members receive presentations but have little opportunity to question assumptions or influence decisions may function more as an audience than an advisory body.
Technical Language Can Create Participation Without Power
Researchers can technically invite comments while presenting information in a form that makes meaningful response difficult. Dense protocols, unexplained statistical language, unfamiliar acronyms, rushed presentations, or materials available only in a non-preferred language can produce an engagement process that looks open while remaining inaccessible.
If community members need particular information to contribute meaningfully, researchers should provide it in an understandable and appropriate form.
Accessibility is not about making community partners into researchers. It is about giving them enough information to exercise the role they have been asked to perform.
Power Can Silence People Even When the Meeting Is Open
Researchers may say that everyone was invited to speak, yet some people may find disagreement difficult in the presence of community leaders, physicians, employers, senior academics, funders, or government officials.
Tokenism can therefore occur even when researchers sincerely ask for feedback. Meeting design, hierarchy, social relationships, and control of the agenda affect who actually speaks.
Separate consultations, confidential feedback, smaller discussions, or other mechanisms may be needed when the usual meeting format systematically privileges certain voices.
Watch Out
“Everyone had an opportunity to speak” is a weak measure of engagement if only the most powerful people could realistically use that opportunity. Ask who spoke, who did not, and what conditions made disagreement easier or harder.
Unpaid Community Labor Can Reveal an Unequal Partnership
Researchers are paid to attend meetings, prepare documents, analyze information, and contribute expertise. Community contributors may be asked to perform substantial advisory work without reimbursement, recognition, or compensation because their involvement is framed as volunteering for their community.
Not every engagement activity requires payment, and local rules matter. But researchers should consider whether people are contributing substantial time, expertise, travel, caregiving costs, or other resources and whether the arrangement distributes the burdens of engagement fairly.
Tokenism becomes especially plausible when community expertise is celebrated rhetorically while treated as economically valueless.
Engagement Can Become Extractive Too
Researchers can extract more than data from research participants. They can also extract community knowledge, introductions, cultural interpretation, credibility, and trust from engagement partners.
The TRUST Code emphasizes equitable research relationships grounded in fairness, respect, care, and honesty. It calls for local communities and participants to be included throughout the research process where possible and for local researchers to participate in areas including design, implementation, data ownership, intellectual property, and authorship.
This becomes particularly important in international research where disparities in funding, institutional prestige, and access to publication can turn apparently participatory relationships into another form of extraction.
Engagement Should Leave an Audit Trail of Influence
Researchers should be able to answer a simple question: what happened because community engagement occurred?
The answer need not always be a protocol change. Engagement might confirm that a proposed approach is locally acceptable, identify a concern that researchers investigated, improve communication materials, alter dissemination, clarify community priorities, or reveal disagreement that the ethics committee needs to know about.
Documenting input, responses, and relevant changes helps distinguish substantive engagement from participation that exists mostly in grant applications and photographs.
Closing the Feedback Loop Matters
Community members who offer advice should not have to guess whether anyone read it. Researchers should explain what they heard, what they changed, what they did not change, and why.
This does not require a bureaucratic response matrix after every conversation. It does require enough feedback for contributors to know that participation was taken seriously.
NIH recommendations for community engagement emphasize consistent collaboration and reciprocal feedback throughout research. The principle is straightforward: consultation without response can feel remarkably similar to being ignored.
Engagement Can Become Tokenistic After the Study Too
A project may involve community partners actively during recruitment and then disappear when data collection ends. Publications are produced, conference presentations follow, and participants never hear what the research found.
The Declaration of Helsinki describes engagement as continuing after research and includes communities in understanding and disseminating results. The TRUST Code similarly requires feedback of research findings to local communities and participants in a meaningful and understandable form.
Researchers should therefore think about returning research findings to the communities where data were collected as part of the relationship rather than as a courtesy if time remains.
