03 · What You Need to Know
Where Stakeholders Can Contribute From Idea to Impact
There is no single universal research-engagement sequence
Research is often drawn as a neat cycle: identify a problem, formulate a question, design the study, collect data, analyze results, disseminate findings, and begin again. Actual research is usually less tidy. Decisions are revisited, protocols change, findings generate new questions, and dissemination can begin before the final paper exists.
Stakeholder engagement follows the same reality. Different frameworks organize research stages differently.
For example, PCORI currently describes meaningful engagement as active partnership throughout the research process, from planning the study through conducting it and disseminating results. Its earlier Engagement Rubric grouped potential activities into the broad phases of planning, conduct, and dissemination.
The categories are therefore less important than the principle: identify consequential decisions throughout the project and determine where partners can contribute.
Stakeholders can help identify priorities before there is a final research question
One of the earliest opportunities for involvement occurs before researchers have decided exactly what to study.
Patients, communities, practitioners, policymakers, or other stakeholders may identify problems that researchers have underestimated or overlooked. They may also distinguish questions that are academically interesting from questions that matter to people making real decisions.
Early involvement can therefore influence the research agenda itself rather than merely improving a study whose purpose has already been determined.
This is the strongest version of involving communities in deciding the research question. It gives stakeholders an opportunity to influence not only how research is conducted but what receives research attention in the first place.
Stakeholders can refine the research question and outcomes
Even when researchers begin with a broad topic, stakeholders may help refine what should actually be asked.
A clinical researcher may focus on symptom reduction while patients emphasize whether they can return to ordinary activities. An education researcher may prioritize test performance while teachers or students identify workload, engagement, accessibility, or classroom feasibility as important outcomes.
Stakeholder input at this stage can help determine whether the study is answering a question that affected people and intended users consider meaningful.
This does not mean popularity should determine scientific questions. Researchers still need to consider what is unknown, what can be investigated rigorously, and what contribution the study can make.
Stakeholders can contribute to study design
Once the question becomes clearer, stakeholders may contribute to methodological decisions for which their expertise is relevant.
They might help identify acceptable recruitment procedures, comment on eligibility criteria, refine interventions, review interview guides, assess participant burden, suggest outcomes, improve survey language, or identify implementation barriers.
They may notice practical problems that are invisible from a protocol. A two-hour study visit may appear methodologically manageable while being unrealistic for caregivers. An online recruitment strategy may exclude people with limited digital access. A technically validated questionnaire may contain language that participants interpret differently from researchers.
The scope and limits of stakeholder contributions to methods and data collection should be planned rather than assumed.
Stakeholders can review participant-facing materials
Participant information sheets, consent materials, recruitment messages, questionnaires, interview guides, and intervention materials are obvious opportunities for stakeholder contribution.
People similar to the intended participants may identify jargon, ambiguous language, insensitive wording, unrealistic instructions, or information that researchers assumed was obvious.
This is often a bounded form of involvement. It can still be useful without turning the entire project into participatory research or co-production.
Stakeholders can contribute during recruitment and study conduct
Engagement does not have to stop once data collection begins.
Partners may help researchers understand why recruitment is slower than expected, whether particular groups are being missed, or whether study procedures are creating unexpected burdens. Community organizations may help researchers understand local communication channels. Practitioner partners may identify implementation problems emerging in real time.
In some participatory projects, appropriately trained partners may take more direct research roles, such as facilitating recruitment, delivering aspects of an intervention, or contributing to data collection. Whether such activities are suitable depends on the study, ethics arrangements, training, confidentiality, institutional requirements, and the partner's role.
Stakeholders can contribute to analysis and interpretation
Stakeholder involvement is sometimes assumed to end when the dataset reaches the researcher. It need not.
Partners may help interpret findings by bringing contextual, experiential, clinical, organizational, or community knowledge to the discussion. They may recognize explanations researchers have overlooked or challenge an interpretation that appears plausible academically but does not fit practice.
This contribution should not be confused with allowing stakeholders to choose the result they prefer. Analytical procedures must remain defensible, and interpretations must be supported by evidence.
Stakeholder involvement can improve the range of interpretations considered without giving any group, including researchers, permission to make the data say whatever they would like it to say.
Stakeholders can help decide how findings should be communicated
A journal article is not necessarily the format most useful to everyone with a stake in the findings.
Partners can identify who needs to know the results and which formats those audiences are likely to use. Depending on the project, this might lead to accessible summaries, community meetings, policy briefs, practitioner resources, patient materials, educational resources, presentations, or digital communication alongside scholarly publication.
Partners can also identify language that is technically accurate but likely to be misunderstood or stigmatizing.
PCORI explicitly includes dissemination among the phases in which partners can contribute, and its current Foundational Expectations call for early and ongoing engagement from planning through conduct and dissemination.
Stakeholders can contribute to using and implementing findings
The end of data collection is not necessarily the end of stakeholder involvement. People and organizations expected to use findings may help researchers consider what the evidence means for practice, services, policy, future research, or implementation.
They may identify what would need to change before a recommendation could work in a real setting, which audiences have authority to act, or what additional evidence decision-makers would need.
This stage also exposes an important distinction between dissemination and implementation. Communicating a result does not guarantee that anyone can or should act on it. Stakeholders can help clarify the conditions under which findings are actually usable.
Stakeholders can help evaluate the engagement itself
Engagement should not be assumed successful simply because planned meetings occurred.
PCORI's current Foundational Expectations include ongoing review and assessment of engagement. Teams are encouraged to examine whether engagement is achieving its goals and to improve it over time.
Partners themselves are essential sources of information for that assessment. Did they have enough information to contribute? Were meetings accessible? Could their input change decisions? Did they understand what happened to their suggestions? Were particular voices consistently dominant?
Engagement can therefore be adjusted while a project is underway rather than evaluated only retrospectively.
Not every stakeholder belongs at every stage
The argument for engagement across research does not imply continuous attendance by everyone.
| Research stage |
Possible stakeholder contribution |
Example |
| Priority setting |
Identify important problems and unanswered questions |
Patients identify outcomes that current studies overlook |
| Question development |
Refine relevance, scope, and priorities |
Practitioners clarify the decision the research needs to inform |
| Study design |
Inform methods, outcomes, feasibility, and acceptability |
Community partners identify an impractical recruitment procedure |
| Study conduct |
Identify emerging barriers and contribute to appropriate research activities |
Partners help understand why recruitment is excluding a group |
| Analysis and interpretation |
Provide contextual or experiential interpretation |
Service users challenge an assumption about an unexpected finding |
| Dissemination |
Identify audiences, messages, and useful formats |
Partners develop an accessible summary alongside the journal paper |
| Use and next steps |
Consider implementation, implications, and future questions |
Decision-makers identify what additional evidence is needed before adoption |
The appropriate pattern will differ among projects. A policymaker may have little reason to comment on interview wording but an important role in understanding what evidence would inform policy. A patient partner may make particularly valuable contributions to outcome selection and participant burden. A statistician's expertise becomes crucial for analytical decisions.
Good engagement matches people to decisions where their knowledge can contribute.
Early engagement matters because some decisions become difficult to change
Once funding has been awarded, budgets may be fixed. Once ethics approval is granted, major protocol changes may require amendments. Once data have been collected, an outcome that was never measured cannot usually be recovered by asking stakeholders afterward whether it mattered.
This is why current PCORI guidance emphasizes early and ongoing engagement. Partners can contribute to developing the research topic, questions, approach, and outcomes before those elements become difficult to alter.
Early involvement does not make later involvement unnecessary. Rather, different stages create different opportunities.