ArticleResearch involvement and engagement2021
Conceptualising and constructing 'diversity' through experiences of public and patient involvement in health research.
Article in Research involvement and engagement, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 papers, 2 of them syntheses 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
39 citing papers in PubMed, 2 syntheses or guidelines pooled it, 65 citations in OpenAlex.
- Barriers and Facilitators to The Involvement of Under-Represented Children and Young People (aged 8-25) in Mental Health Research - a Systematic Review.Clinical child and family psychology review · 2025Pooled it
- Patient and Public Involvement Work With Parents of Children With Life-Limiting Conditions and Bereaved Parents: A Rapid Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- "It gives me confidence and value": evaluating All_Ears@UoS patient and public involvement and engagement (PPIE) group three years on.Research involvement and engagement · 2026Article
- Compensating patient partners on health research teams: a qualitative descriptive study of barriers, facilitators, and implications for equity, diversity, and inclusion in Canadian patient-oriented research.Research involvement and engagement · 2026Article
- "To make a positive difference": diverse youth perspectives on getting involved in mental health research.Research involvement and engagement · 2026Article
- Building capacity for patient-engagement in neuromuscular disease research: A network project.Journal of neuromuscular diseases · 2026Article
- Evaluating Patient and Public Involvement and Engagement Activity Within the 3DPiPPIn Trial: A Qualitative Exploration of Contributors' Perspectives on Their Impact.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- From tokenism to transformation: lessons from the TOGETHER study for building inclusive and equitable research.Research involvement and engagement · 2026Article
- Real-Time Cardiac Biofeedback Intervention: Experiences of Patient and Public Involvement in a Randomized Controlled Trial.Journal of participatory medicine · 2026Article
- PPI in LifeMap-QUEST: an example of co-producing videos in different languages to support inclusion in a clinical study.Research involvement and engagement · 2026Article
- Article
- Involving Experts by Experience in Craniofacial Research.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2025Article
- Patient and public involvement in secure mental health research: setting-specific considerations and a protocol for involvement in the CORAS study (COllaborative Risk ASsessment and management).Research involvement and engagement · 2025Review
- Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study.Journal of participatory medicine · 2025Article
- Targeting everyday decision makers in research: early career researcher and patient and public involvement and engagement collaboration in an AI-in-healthcare project.Research involvement and engagement · 2025Article
- Co-Designed Online Training Program for Worry Management: The Role of Young People With Lived Experience of Worry in Program Development.JMIR formative research · 2025Article
- Patient engagement for the development of equity-focused health technology assessment (HTA) recommendations: a case study of two Canadian HTA organizations.International journal of technology assessment in health care · 2025Article
- Public Involvement to Enhance Care Home Research; Collaboration on a Minimum Data Set for Care Homes.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Building a diverse national research advisory board.Journal of clinical and translational science · 2025Article
- Interrogating the effectiveness of service engagement for underserved populations in complex health and social care systems: towards an equitable engagement strategy.International journal for equity in health · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIncreasing the accessibility of public and patient involvement (PPI) in health research for people from diverse backgrounds is important for ensuring all voices are heard and represented. Critiques of PPI being dominated by 'the usual suspects' reflect concerns over the barriers to involvement in PPI faced by people from minority groups or non-professional backgrounds. Yet, what has received less attention is how undertaking PPI work might produce diverse experiences, potentially shaping the motivation and capacity of people from different backgrounds to continue in PPI.
methodsWe conducted qualitative research to explore experiences of the health research PPI field in the UK and to understand how these might shape the accessibility of PPI for people of diverse backgrounds. We conducted in-depth and follow-up interviews with five PPI contributors with experience of multiple health research projects, and a focus group with nine people in professional roles relating to PPI. Interview data were analysed using a narrative approach, and then combined with the focus group data for thematic analysis.
resultsThe structure, organisation and relationships of health research in the UK all shape PPI experiences in ways that can intersect the different backgrounds and identities of contributors, and can pose barriers to involvement and motivation for some. Navigating processes for claiming expenses can be frustrating particularly for people from lower-income backgrounds or with additional needs, and short-term research can undermine relationships of trust between contributors and professionals. Pressure on PPI coordinators to find 'more diverse' contributors can also undermine ongoing relationships with contributors, and how their inputs are valued.
conclusionsTo increase diversity within PPI, and to ensure that people of different backgrounds are supported and motivated to continue in PPI, changes are needed in the wider health research infrastructure in the UK. More resources are required to support relationships of trust over time between contributors and professionals, and to ensure the unique circumstances of each contributor are accommodated within and across PPI roles. Finally, critical reflection on the pressure in PPI to seek 'more diverse' contributors is needed, to understand the impacts of this on those already involved.
Indexed as
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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.