Methods

Glossary of Participatory and Community-Led Research: 60 Terms Explained

Methods · By the Common Inquiry editorial team · Published 2026-11-06

Handwritten index cards and coloured sticky notes laid out on a wooden table after a group brainstorming session
Cards from a volunteers' brainstorming session. Photo: Romaine, Wikimedia Commons, CC0.

Participatory research has a vocabulary of its own, borrowed from community organising, public health, ecology, development studies and data science. The same word can mean different things in a funder's guidance and in a community meeting. This glossary defines the terms that come up most often, in plain language, and says where each one comes from so that you can go back to the original source.

Jump to: A–C · D–I · J–O · P–R · S–Z

A–C

Action research
Research carried out in cycles of planning, acting, observing and reflecting, with the aim of changing a situation as well as understanding it. The term is usually credited to the psychologist Kurt Lewin, whose article "Action Research and Minority Problems" appeared in the Journal of Social Issues in 1946. Participatory action research adds the requirement that the people affected take part as researchers.
Arnstein's ladder
An eight-rung model of citizen participation, from manipulation to citizen control, published by Sherry Arnstein in the Journal of the American Institute of Planners in 1969. Its middle rungs (informing, consultation, placation) are grouped as "tokenism". Still the most cited yardstick for judging how much power a project shares.
Belmont Report
The 1979 US report that set out three principles for research with human participants: respect for persons, beneficence and justice. It was written by a national commission created after public revelations about the Tuskegee syphilis study, and remains the basis of US ethics review.
BioBlitz
An intensive survey, often over 24 hours, in which volunteers and specialists record as many species as possible in a defined area. A common entry point to contributory citizen science.
CARE principles
Four principles for Indigenous data governance: Collective benefit, Authority to control, Responsibility and Ethics. Released by the Global Indigenous Data Alliance in 2019 and described in the Data Science Journal in 2020 (Carroll et al., "The CARE Principles for Indigenous Data Governance"). Designed to complement the FAIR principles: data should be people-oriented as well as data-oriented.
Citizen science
Scientific research in which members of the public take part, most often in data collection and increasingly in design and analysis. The sociologist Alan Irwin used the term in his 1995 book Citizen Science, with an emphasis on science that responds to citizens' concerns. The European Citizen Science Association published "Ten Principles of Citizen Science" in 2015.
Citizens' jury
A deliberative method in which a small group of randomly selected members of the public hears evidence from witnesses, questions them and produces recommendations. Developed in the 1970s by Ned Crosby in the United States; the German "planning cell" of Peter Dienel is a close relative.
Community advisory board (CAB)
A standing group of community members who advise a research team on questions, methods, recruitment, interpretation and how results are shared. Its influence depends on its mandate: a CAB that only reviews finished plans sits on the "consultation" rung of Arnstein's ladder.
Community researcher (peer researcher)
A member of the community being studied who is trained and paid to carry out research tasks, such as interviews, surveys or analysis. Peer researchers can reach people that outsiders cannot, but they also carry particular risks, for example hearing distressing stories from neighbours, which need support and supervision.
Community-based participatory research (CBPR)
A partnership approach, mainly used in public health, in which community members, organisations and academic researchers share decisions at every stage of a study. The widely used set of principles comes from Barbara Israel and colleagues' 1998 review in the Annual Review of Public Health.
Conscientisation
From the Portuguese conscientização: the process by which people come to understand the social causes of their situation and act on them. Central to Paulo Freire's Pedagogy of the Oppressed (English translation 1970) and to the Latin American tradition of participatory action research.
Consultation
Asking people for their views without any commitment that those views will change the outcome. Useful in itself, but often presented as participation when decisions remain with researchers or officials.
Contributory, collaborative and co-created projects
Models of public participation in scientific research. In contributory projects, volunteers mainly collect data; in collaborative projects they also help refine the design or analyse data; in co-created projects they work with scientists on every stage, starting with the question. Jennifer Shirk and colleagues (2012) added contractual projects, where communities commission research, and collegial ones, where amateurs work independently.
Co-production
Research or services designed and delivered jointly by professionals and the people they concern, sharing power and responsibility from start to finish. The political economist Elinor Ostrom used the term in the 1970s for public services that depend on citizens' input. In UK health research, NIHR guidance published under the INVOLVE name in 2018 sets out its key principles: sharing power, including all perspectives and skills, respecting and valuing the knowledge of all, reciprocity, and building and maintaining relationships.
Crowdsourcing
Distributing a defined task, such as classifying images or transcribing records, to large numbers of volunteers, usually online. The most common and least participatory form of citizen science: volunteers contribute effort but rarely shape the questions.

D–I

Data sovereignty
The principle that data are subject to the laws and governance of the nation or people they come from. Indigenous data sovereignty applies this to data about Indigenous peoples, lands and resources, whoever holds them.
Deliberation
Structured discussion in which participants weigh evidence and arguments before reaching a view, as opposed to simply recording opinions. Citizens' juries, citizens' assemblies and consensus conferences are deliberative methods.
Epistemic injustice
A wrong done to someone in their capacity as a knower. The philosopher Miranda Fricker (2007) distinguished testimonial injustice, when a speaker is given less credibility because of prejudice, and hermeneutical injustice, when a group lacks the shared concepts to make sense of its experience. Often cited as a reason for participatory research.
Experiential knowledge (lived experience)
Knowledge gained from living with a condition, a place or a situation, as opposed to knowledge gained from study. People with such knowledge are sometimes called "experts by experience". Participatory approaches treat it as evidence in its own right.
Extreme citizen science
The highest of four levels of participation described by the geographer Muki Haklay (2013), after crowdsourcing, distributed intelligence and participatory science: communities define the problem, collect and analyse the data and decide how to use the results, with scientists as facilitators.
FAIR principles
Guiding principles that make research data Findable, Accessible, Interoperable and Reusable, published by Mark Wilkinson and colleagues in Scientific Data in 2016 ("The FAIR Guiding Principles for scientific data management and stewardship"). FAIR does not mean open: data can be FAIR and still have controlled access, which matters for community data.
Gatekeeper
A person or organisation that controls access to a community or group, such as a community leader, a service manager or a head teacher. Relying on gatekeepers alone can exclude the people they do not represent.
GRIPP2
Guidance for Reporting Involvement of Patients and the Public, version 2: a checklist, in long and short forms, for describing patient and public involvement in research articles, published by Sophie Staniszewska and colleagues in the BMJ in 2017.
Honorarium
A payment that recognises someone's time and expertise, often a fixed sum per meeting, rather than a wage. Whether to pay an honorarium, a wage or a voucher has practical consequences for tax and welfare benefits; see our guide to paying community researchers.
IAP2 Spectrum of Public Participation
A five-level framework from the International Association for Public Participation: inform, consult, involve, collaborate and empower. Unlike Arnstein's ladder, it presents each level as legitimate for some purposes, provided the promise to the public is kept.
Indigenous research methodologies
Approaches to research grounded in Indigenous knowledge systems, values and protocols, often led by Indigenous researchers and accountable to the community rather than to the institution alone.
A person's voluntary agreement to take part in research after being told what it involves, its risks and their right to withdraw. Community research adds two ideas: collective consent, where a community or its representatives agree to a study, and process consent, where consent is checked again as the project evolves.

J–O

James Lind Alliance Priority Setting Partnership
A UK method in which patients, carers and clinicians work together to identify and rank unanswered questions about a condition or treatment, ending with a shared "top 10" list of research priorities for funders.
Knowledge exchange (knowledge mobilisation)
The two-way flow of knowledge between researchers and the people who use or are affected by research. The word "exchange" signals that knowledge flows in both directions, unlike older ideas of "dissemination" or "transfer".
Lay summary
A short, jargon-free account of a study's aims, methods and results, written for non-specialists. Many funders require one; the best are written or reviewed with members of the public.
Living Knowledge network
The international network of science shops and community-based research centres, which grew out of the European science shop movement.
Member checking (respondent validation)
Returning interview transcripts, interpretations or draft findings to participants so that they can confirm, correct or challenge them. Participatory projects usually build it into joint analysis sessions.
Memorandum of understanding (MoU)
A written agreement between partners setting out roles, decision-making, budget, data ownership, authorship and how disagreements will be resolved. Our section on ethics and partnerships includes a guide to drafting one.
Most Significant Change technique
A participatory evaluation method in which participants collect stories of change and groups discuss and select the most significant ones, explaining their choices. A widely used guide was written by Rick Davies and Jess Dart in 2005.
"Nothing about us without us"
A slogan of the disability rights movement, also the title of James Charlton's 1998 book, now used more widely to argue that decisions and research affecting a group should involve that group.
OCAP®
The First Nations principles of Ownership, Control, Access and Possession, which assert that First Nations in Canada control data collection and own and govern their data. OCAP is a registered trademark of the First Nations Information Governance Centre.
Open data
Data that anyone can freely access, use and share, subject at most to attribution and share-alike conditions. Open data can conflict with privacy and with community control, so participatory projects often choose controlled or tiered access instead.

P–R

Participatory action research (PAR)
Action research in which the people affected by a problem are co-researchers who decide what to study and act on the findings. Strongly associated with the Colombian sociologist Orlando Fals-Borda and with Paulo Freire's popular education. Our guide to participatory action research covers its history and the research cycle.
Participatory mapping
Methods in which community members map their own places, resources, risks or histories, from sketch maps drawn on the ground to participatory GIS (PGIS) with GPS and digital layers.
Participatory rural appraisal (PRA)
A family of visual and group methods (transect walks, seasonal calendars, ranking exercises, community maps) developed in rural development work in the 1980s and 1990s. Robert Chambers described its origins in World Development in 1994.
Participatory video
A process in which a group learns to film and edit and makes its own video on an issue that concerns it, often to speak to decision-makers. The process of making the film is usually considered as important as the product.
Patient and public involvement (PPI)
In UK health research, involvement means research carried out "with" or "by" members of the public rather than "to", "about" or "for" them, in the wording used by the National Institute for Health and Care Research (NIHR). PPI is distinct from being a participant in a study and from engagement activities that inform the public about research.
Photovoice
A method in which participants photograph aspects of their lives, discuss the images in groups and use them to reach policy-makers. Developed by Caroline Wang and Mary Ann Burris and described in Health Education & Behavior in 1997.
Positionality
A researcher's social position (for example class, gender, ethnicity, age, institutional role) and how it shapes access, relationships and interpretation. A positionality statement makes this explicit.
Power sharing
The practical distribution of decisions between researchers and community partners: who sets the question, controls the budget, owns the data and signs off the results. The most reliable test of how participatory a project really is.
Process evaluation
Evaluation of how a project was run (who took part, how decisions were made, what changed along the way) rather than only of its outcomes. Essential for participatory research, whose value often lies partly in the process; our guide to evaluating participatory research covers the main approaches.
Reciprocity
The principle that a research relationship should benefit both sides, through payment, skills, useful outputs or support for community priorities, rather than extracting data and leaving.
Reflexivity
The ongoing practice of examining how one's assumptions, position and actions affect the research. In participatory projects, reflexivity is often shared: partners reflect together on how the partnership itself is working.
Research extractivism (helicopter research)
Research in which outsiders collect data or samples from a community, often in low-income settings, and leave without sharing benefits, credit or results. Codes such as the 2018 Global Code of Conduct for Research in Resource-Poor Settings were written to counter it.

S–Z

Science shop
A unit, usually based in a university, that takes research questions from community groups and non-profit organisations and has them answered, often by students, free of charge or at low cost. The model began in the Netherlands in the 1970s.
Situated knowledges
The argument, set out by Donna Haraway in Feminist Studies in 1988, that all knowledge is produced from a particular position, and that objectivity comes from acknowledging partial perspectives rather than from what she called the "god trick" of seeing everything from nowhere.
Stakeholder
Anyone with an interest in, or affected by, a research project. A broad term: good practice is to name which groups are meant and what role each will play.
Theory of change
A description, often drawn as a diagram, of how and why a project's activities are expected to lead to the outcomes it seeks, with the assumptions made at each step. Drawing one with community partners is a common first exercise in participatory evaluation.
Tokenism
Involving people in ways that look participatory but give them no real influence, such as a single "community representative" on a board. In Arnstein's ladder, informing, consultation and placation form the tokenism level.
Transdisciplinary research
Research that integrates knowledge from several academic disciplines and from non-academic partners to address a real-world problem, common in sustainability science.
Transect walk
A structured walk through an area with residents, who point out and discuss what they observe (land use, hazards, services). Originally a PRA method, now used in neighbourhood and housing research.
Tuskegee syphilis study
A US Public Health Service study (1932–1972) that observed untreated syphilis in hundreds of Black men in Macon County, Alabama, without their informed consent and without offering treatment once penicillin became available. Its exposure led to the Belmont Report and remains a reference point in community distrust of research. See research ethics with communities.
UK Standards for Public Involvement
Six standards published in 2019 by a partnership of UK health research bodies: inclusive opportunities, working together, support and learning, governance, communications, and impact.
Walking interview (go-along)
An interview conducted while walking through a place with the participant, who chooses the route. The surroundings prompt memories and observations that a sit-down interview would miss.
World Café
A conversation format in which participants discuss questions in small groups at tables, then move to new tables, carrying ideas between groups.

Several of these terms describe the same question, how much power participants hold, from different angles. The table below lines them up; the rows are approximate and the frameworks were not designed to match exactly.

Arnstein (1969)IAP2 spectrumCitizen science (Shirk et al., 2012)
InformingInform–
ConsultationConsultContributory
PlacationInvolveCollaborative
PartnershipCollaborateCo-created
Delegated power, citizen controlEmpowerContractual, collegial

For a fuller discussion of these models and their limits, read Arnstein's ladder and other participation typologies.

Sources

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