Explainer · Methods · Principles
Participatory research is research carried out with the people it concerns rather than on them: community members, patients or service users help shape the questions, gather and interpret the evidence, and decide what happens with the findings. This guide covers how it differs from standard qualitative research, the methods it uses, and when it is the right approach.
Participatory research is a systematic approach to generating knowledge with communities rather than about them. Rather than treating people as the subjects of research: populations to be studied, data to be collected; it positions them as partners in the inquiry itself.
In practice this means community members are involved in shaping the research questions, selecting the methods, collecting data, interpreting findings, and deciding how results are used. The researcher is not a detached expert extracting information; they are a collaborator working alongside people who have their own knowledge, expertise, and stake in the outcome.
"Participatory research" is an umbrella term. It covers a family of related but distinct approaches: community-based participatory research (CBPR), participatory action research (PAR), co-production, lived experience research, and peer research, each with its own emphasis and tradition.
Participatory research is a broad tradition. These are the distinct approaches most commonly used in the UK.
CBPR is the most formally developed participatory approach, originating in public health research. It involves deep partnership between researchers and community members from study design through to dissemination; community partners are co-investigators, not consultees. CBPR is particularly associated with health disparities, marginalised populations, and research where building community trust is essential to honest data collection.
PAR combines the participatory principle with an explicit change orientation. Communities identify the problem, shape the inquiry, and are active agents in implementing what the research reveals. PAR has roots in community development, international development, and organisational learning, and is now widely used in NHS service improvement and third sector programme evaluation.
Co-production research applies an equal partnership model between service users, communities, and organisations. It is embedded in NHS England's approach to service improvement and is increasingly expected in NIHR funding applications. The defining feature is power-sharing: co-production is not consultation, and it is not research with a token involvement element added at the end.
Lived experience research positions people with direct, personal experience of an issue as the primary source of insight. It is particularly prominent in mental health, disability, chronic conditions, and health inequalities research, areas where professional assumptions have historically shaped services that do not reflect how people actually live.
Peer research trains community members to conduct research with their own communities. It reaches populations that conventional research cannot access, generates trust that external researchers cannot replicate, and produces data less distorted by the social dynamics of a formal research encounter. Effective with communities that have historical reasons to be suspicious of institutional research.
Photovoice, participatory video, storytelling, and timeline mapping. Used where written or verbal expression may limit participation, or where the research benefits from richer, more personal accounts than structured interviews can generate. Often combined with other approaches to extend access and deepen insight.
Participatory research is defined as much by its principles as its methods
Researchers and communities are co-owners of the inquiry. Not lead investigator and helpful subjects: genuine partners with defined roles, recognised contributions, and shared ownership of what the research produces.
Community knowledge (the knowledge that comes from lived experience of an issue) is as valid and important as academic or professional knowledge. Participatory research structures the inquiry so that both kinds of knowledge can be brought to bear.
Communities have genuine influence over decisions: what questions are asked, what methods are used, what the findings mean, what happens next. This is the clearest point of distinction from consultation, which involves asking communities for their views without giving them any real control.
The research agenda is shaped by what communities identify as important, not just what funders or organisations want to know. This does not preclude commissioned research; it means the framing of the questions is genuinely informed by community priorities.
Communities benefit from the research, not just contribute to it. This might mean findings are used to change services the community uses, that community members develop skills through participation, or that the community receives accessible outputs alongside the formal report.
Participatory research meets the same standards of systematic inquiry as any other form of research. Being participatory does not mean being less rigorous; it means the rigour is applied through a different kind of relationship between researchers and the people they work with.
The distinctions matter for choosing the right method
Qualitative research (interviews, focus groups, ethnography) treats participants as sources of data. The researcher designs the study, conducts the sessions, and analyses the findings. Participatory research shifts the relationship: communities are involved in all of those stages. The resulting evidence is richer and carries more community legitimacy, but the process takes longer and requires a different kind of relationship-building.
PPIE (Patient and Public Involvement and Engagement) involves patients and communities in research decisions: advisory input, materials review, steering group membership. Participatory research involves them in generating knowledge. The two are complementary: PPIE provides governance infrastructure, participatory research provides the deeper methodology. Many NHS studies use both.
Consultation asks communities for their views. Participatory research makes communities partners in generating the evidence that informs decisions. The difference is power: in consultation, decisions are made by organisations with community input. In participatory research, communities have genuine influence over the research process and its outputs.
Co-design is generative: it creates something together, a service, a product, a policy approach. Participatory research is inquiry-oriented: it understands something together. They work well in sequence, with participatory research generating the evidence that co-design then works from. Both involve genuine community partnership, but the relationship and the output are different.
Some situations call for participatory approaches; others are better served by standard methods
Marginalised or historically exploited communities.
The situation Communities with historical reasons to distrust institutional research: health inequalities populations, communities that have been studied without benefit, groups where formal research settings generate social desirability bias.
Why participatory Co-ownership of the inquiry builds trust. Peer research breaks down the researcher/subject dynamic that drives underreporting and withdrawal.
Questions that outsiders cannot answer.
The situation You need to understand what life is actually like for a community: not a professional's model of that life, not a service commissioner's assumptions, but the lived reality from the inside.
Why participatory People with lived experience of an issue notice things researchers never think to ask about. Involving them in shaping the questions changes what gets asked, and what gets found.
Evidence that commissioners and communities can both stand behind.
The situation The findings will inform commissioning decisions, service redesign, or policy, and the evidence needs to be credible to both the commissioning organisation and the communities affected.
Why participatory Evidence that communities helped generate is harder to dismiss. It carries a kind of legitimacy that external research, however rigorous, cannot replicate.
Funded research and NHS co-production requirements.
The situation NIHR grant applications require evidence of genuine community involvement. NHS England's co-production framework expects authentic partnership. ICBs have statutory duties to involve communities in commissioning decisions.
Why participatory A properly structured participatory approach provides documented, defensible evidence of genuine co-production, not a token involvement element added after the design was complete.
Action research is research conducted with the explicit aim of creating change. Participatory action research (PAR) adds community co-ownership; affected communities are co-investigators, not just the setting for the study. All PAR is action research; not all action research is participatory in the full sense. See our action research page for more.
Partnership, equity of knowledge, power-sharing, relevance, reciprocity, and rigour. The key distinction from most other research approaches is that community knowledge is treated as equally valid to professional or academic knowledge, and communities have genuine influence over how the research is conducted.
NHS trusts and ICBs (under the banner of co-production), NIHR-funded research teams, local authorities, charities, housing associations, public health teams, higher education institutions, and organisations working with marginalised communities. NIHR expects evidence of genuine community involvement in most funded research.
Facilitated workshops, peer research, in-depth interviews, focus groups, journey mapping, photovoice, participatory video, narrative methods, and co-analysis sessions. The method mix depends on the community and the question. See our full participatory research service page for a breakdown of approaches.
Qualitative research is a broad category covering any research that produces non-numerical insight: interviews, focus groups, ethnography, thematic analysis. Participatory research is an approach to conducting research, not a type of data. Participatory research can use qualitative methods (and usually does), but its defining feature is the relationship between researcher and community: communities are partners in generating knowledge, not subjects of it. A focus group can be qualitative research without being participatory; a participatory study almost always uses qualitative methods.
We fully recognise the effort your team invested in recruitment, moderation, and analysis, and we genuinely appreciate the quality of the discussions and reporting.
Trusted PPI and PPIE delivery partner to the NIHR HealthTech Research Centre in Accelerated Surgical Care.
Tell us about your research question, the community you want to work with, and who the findings are for. We will recommend the right method and give you a clear scope.
Discuss your studyWe usually respond within one working day.
Book a free 20-minute call. No obligation, no sales pitch. We'll tell you honestly whether research is worth it for your decision, and what it would cost.