ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Epistemic justice in public involvement and engagement: Creating conditions for impact.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic review of theories, models and frameworks used for youth engagement in health research.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Involving Parents in Prevention: A Case Example of Research and Intervention Development to Improve Financial Well-Being Support.Journal of prevention (2022) · 2026Article
- Meta-Research on the Science of Lived Experience Engagement in Mental Health and Substance Use Health Research: A Scoping Review and Qualitative Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Meaningful or Marginal: An Integrative Review of Consumer and Community Involvement in Migrant Health Research.Healthcare (Basel, Switzerland) · 2026Review
- "If the funders said to me that I have to dress in orange, I would dress in orange": findings from qualitative interviews on researchers' experiences of public involvement.Research involvement and engagement · 2026Article
- Ethical Design of Data-Driven Decision Support Tools for Improving Cancer Care: Embedded Ethics Review of the 4D PICTURE Project.JMIR cancer · 2025Review
- Improving ways of working with researchers with lived expertise (of homelessness).Research involvement and engagement · 2025Article
- Meaningful public involvement: changing research institutions toward epistemic justice.Frontiers in public health · 2025Article
- Involving Knowledge Users in Health Services Research: Collective Reflections and Learning From a National Evaluation of Recurrent Miscarriage Services.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Developing inclusive public involvement and engagement activities with secondary school students and educational professionals: a protocol.Research involvement and engagement · 2024Review
- PPIE in a technical research study: Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- What motivates public collaborators to become and stay involved in health research?Research involvement and engagement · 2024Article
- Patient and public involvement in health research from researchers' perspective.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- 'Language has been granted too much power'.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Epistemic justice in public involvement and engagement: Creating conditions for impact.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- First, breathe: Rethinking neuroscience engagement at Glastonbury festival.Brain and neuroscience advancesArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionPatient and public involvement in research is anchored in moral and epistemological rationales. Moral rationales relate to the public having a right to influence how knowledge about them is generated. Epistemological rationales relate to how research design and implementation can improve when informed by experiential, as well as technical, knowledge. In other words, public involvement can increase the epistemological resources of researchers, and contribute to research that is fit for purpose and has high external validity.
methodsThis article presents an analysis of 3 meetings and 11 interviews with public collaborators and researchers in three UK-based health research studies. Data comprised transcripts of audio-recorded research meetings and interviews with public collaborators and researchers. Data were first analysed to develop a data-informed definition of experiential knowledge, then thematically to investigate how this experiential knowledge was considered and received within the research space.
resultsAt meetings, public collaborators shared their experiential knowledge as stories, comments, questions, answers and when referring to their own roles. They were aware of crossing a boundary from everyday life, and some adapted their contributions to fit within the research space. Although researchers and public collaborators made efforts to create an inclusive climate, obstacles to impact were identified.
conclusionsConsidering experiential knowledge as a boundary object highlights that this knowledge has a different form to other kinds of knowledge that contribute to research. To enable impact from experiential knowledge, researchers need to create a space where public collaborators experience epistemic justice. PATIENT AND PUBLIC CONTRIBUTION: The Peninsula Public Engagement Group (PenPEG) was involved in the planning and conceptualization of the study, including the development of the ethics application and the interview schedules. One member of this group (Richard Fitzgerald) and one from outside the group (Leon Farmer), were full members of the author team and were involved in the data analysis. Leon Farmer has since become a member of PenPEG. Richard Fitzgerald and Leon Farmer were not involved in the three research studies sampled for this study. Sadly Richard Fitzgerald died during the course of this study.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.