01 · The Question
Who Gets to Decide What Is Worth Researching?
Researchers are accustomed to developing questions from literature reviews, theoretical debates, identified research gaps, previous findings, or priorities established by funders. These are legitimate starting points. But they are not the only places from which important research questions can emerge.
People living with a problem may notice questions that researchers have never asked. Communities may consider an outcome important even though it receives little attention in the literature. Practitioners may know that the question academics are pursuing does not match the decision people actually face.
This raises a consequential possibility: can communities participate not merely after the research question has been written, but in deciding what the research should ask in the first place?
Yes. The harder issue is how to turn community priorities into research questions that remain useful, answerable, ethical, and methodologically defensible.
03 · What You Need to Know
How Communities Can Contribute to Research Question Development
Research questions do not have to originate exclusively with researchers
The conventional image of research begins with a researcher identifying a gap in the literature and converting it into a question. That pathway is important, particularly when research aims to develop theory, test scientific explanations, replicate previous findings, or address unresolved methodological problems.
Other research questions concern problems experienced directly by communities. In these situations, affected people may hold knowledge that changes what researchers consider worth investigating.
Evidence from stakeholder-engaged research demonstrates that patients, community members, practitioners, and other stakeholders can contribute to topic solicitation and question development. PCORI-funded work has also developed structured methods specifically for engaging stakeholders in generating and prioritizing research agendas.
This possibility follows naturally from involving stakeholders at the earliest stages of research, before the question becomes difficult to change.
Communities can identify problems researchers have overlooked
Academic literature reflects what has already attracted scholarly attention. A research gap can therefore tell you what researchers have not studied sufficiently, but it does not automatically tell you which unanswered question matters most to people living with the problem.
Community knowledge can reveal a different kind of gap.
Suppose researchers studying access to healthcare concentrate on whether services are geographically available. Community members might explain that services technically exist but are difficult to use because appointment schedules conflict with work, transportation is unreliable, communication is inaccessible, or previous experiences have damaged trust.
The community has not merely supplied an opinion about a completed research question. Its knowledge may change the problem the question needs to address.
Community priorities and research questions are not the same thing
A community concern does not always arrive in the form of a researchable question.
People might say, “Students are overwhelmed,” “Our community does not trust the clinic,” or “This program is not working for families.” These statements identify problems or priorities, but researchers and community partners may need to work together to determine what can actually be investigated.
Community priority
A problem, experience, uncertainty, or outcome that people consider important.
Research question
A sufficiently clear and answerable question specifying what the research will investigate.
The movement from one to the other requires intellectual work. Researchers may need to examine existing evidence, clarify concepts, determine what is already known, identify feasible populations or comparisons, and consider which study designs could answer the question.
Community involvement can continue during that translation rather than ending after the initial priority is identified.
Communities can help generate questions, not merely rank researcher-generated ones
There is a meaningful difference between asking communities to rank five questions researchers have already written and allowing them to contribute to question generation.
Both can be legitimate forms of involvement, but they distribute agenda-setting influence differently.
The Stakeholder Engagement in quEstion Development, or SEED, Method offers one concrete example. In demonstrations funded by PCORI, stakeholder groups contributed to conceptualizing research topics, generating research questions, prioritizing those questions, and developing research agendas. The process produced agendas reflecting perspectives from patients, health professionals, and research funders, although the authors also noted that such processes can require considerable time, expertise, and resources.
If the purpose is genuinely collaborative priority setting, researchers should therefore ask whether the range of possible questions is itself open to community influence.
Different communities may prioritize different questions
There is rarely one uncontested “community research question.” Communities contain people with different experiences, resources, interests, and priorities.
Parents and adolescents may disagree about what matters in youth mental health research. Teachers and students may prioritize different outcomes in educational technology research. Community leaders may view a local intervention differently from residents who rarely participate in formal organizations.
This is why identifying whose perspectives are relevant to a research study matters before describing a question as community-informed.
Disagreement does not invalidate community involvement. It can reveal competing priorities that researchers would otherwise miss.
Existing evidence still matters
Community involvement should not replace a literature review.
A question that feels unanswered locally may already have substantial research behind it. Conversely, existing studies may have been conducted in populations or contexts so different that the local uncertainty remains important.
Researchers therefore need to bring community priorities into conversation with the evidence base.
A useful process may begin with community concerns, examine what is already known, identify genuine uncertainties, and then return to partners to determine whether the refined questions still address what matters to them.
In the SEED Method, for example, prioritized stakeholder questions were subsequently examined against the literature so that research gaps and recommendations for future studies could be developed.
Scientific feasibility still matters
A question can be important and still be impossible to answer within a particular study.
Community partners may propose questions requiring a much larger sample, longer follow-up, unavailable data, or resources beyond the project. A desired comparison may be unethical. An outcome may matter greatly but lack a credible way to measure it within the proposed design.
These constraints should generate discussion rather than an academic veto disguised as methodological expertise.
Researchers can explain why a proposed question is difficult and explore alternatives. Perhaps the question can be narrowed, a proxy measure can be evaluated cautiously, the design can change, or the issue can become a priority for a future study.
Partnership does not mean pretending every desirable question is immediately researchable.
Researchers can also bring questions to communities for refinement
Community involvement does not require every research idea to originate outside academia.
A researcher may identify a promising question through previous evidence and then work with relevant communities to examine whether the problem has been framed appropriately. Partners may change the population, outcomes, terminology, comparison, intervention, or practical emphasis.
The key issue is whether the question is genuinely open to refinement. Asking for community feedback after a grant proposal and protocol are effectively immutable offers a different, more limited form of influence.
Question development can reveal whose outcomes count
Research questions often contain implicit judgments about what constitutes success.
A clinical study might ask whether an intervention reduces symptoms, while patients care more about functioning. An educational intervention might focus on examination performance while students and teachers worry about workload, accessibility, or confidence. A public program might be evaluated according to uptake while communities care about whether access is equitable.
Stakeholder-engagement research has documented partner contributions to refining research questions, selecting interventions and outcomes, and changing how outcomes are measured.
Community involvement at the question stage can therefore expose assumptions about which outcomes deserve scientific attention.
Community involvement does not give anyone ownership of the eventual findings
If community partners help choose the question, they have a legitimate stake in how the project proceeds. They do not acquire the right to determine what answer the research produces.
The study may generate findings that challenge the expectations of researchers and community partners alike. Those findings still need to be analyzed and reported accurately.
This distinction protects both participation and research integrity. Communities can influence what is investigated without being expected to endorse whatever the study ultimately finds.
