Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK‐based qualitative interview study
Open accessAbstract
Background: There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals. Objective: To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed. Design: Qualitative interview study. Setting and participants: Thirty‐eight PPI contributors involved in health research across the UK. Results: Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the ‘expert in lived experience’, the ‘creative outsider’, the ‘free challenger’, the ‘bridger’, the ‘motivator’ and the ‘passive presence’. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved. Conclusions: While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors’ potential impact and their motivation to stay involved.
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Combining experiential knowledge with other skills and lived experience created opportunities for contributors to challenge assumptions and influence the research in ways unlikely to arise from a single form of involvement.
“Combining experiential knowledge with other skills and lived experience created opportunities for contributors to challenge assumptions and influence the research in ways unlikely to arise from a single form of involvement [42].”
From Layering perspectives: a structured approach to meaningful patient and public involvement and engagement in the RETURN dental trial (2026) · cites this paper as [42]
The Results (Themes, Table 2) describe contributors using lived experience to assess research proposals and challenging researchers from an outsider position. The Discussion (Main findings) says these roles can overlap and mentions contributors’ experience and skills. It does not establish that combining them produced effects unlikely to arise from a single form of involvement. (LLM, conf=0.84)
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Cites
Patient engagement in research: a systematic review
Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., et al. (2014) · BMC Health Services Research · doi:10.1186/1472-6963-14-89 · Cited by 1,773 · see citing works
Brett, J., Staniszewska, S., Mockford, C., Herron‐Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014) · Health Expectations · doi:10.1111/j.1369-7625.2012.00795.x · Cited by 1,598 · see citing works
Patient and service user engagement in research: a systematic review and synthesized framework
Shippee, N. D., Garces, J. P. D., López, G., Wang, Z., Elraiyah, T. A., Nabhan, M., Brito, J. P., Boehmer, K. B., Hasan, R., Firwana, B., et al. (2013) · Health Expectations · doi:10.1111/hex.12090 · Cited by 630 · see citing works
Evaluating patient and stakeholder engagement in research: moving from theory to practice
Esmail, L., Moore, E., & Rein, A. (2015) · Journal of Comparative Effectiveness Research · doi:10.2217/cer.14.79 · Cited by 502 · see citing works
Staniszewska, S., Brett, J., Mockford, C., & Barber, R. (2011) · International Journal of Technology Assessment in Health Care · doi:10.1017/s0266462311000481 · Cited by 369 · see citing works
‘Is it worth doing?’ Measuring the impact of patient and public involvement in research
Staley, K. (2015) · Research Involvement and Engagement · doi:10.1186/s40900-015-0008-5 · Cited by 363 · see citing works
ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study
Wilson, P., Mathie, E., Keenan, J., McNeilly, E., Goodman, C., Howe, A., Poland, F., Staniszewska, S., Kendall, S., Munday, D., et al. (2015) · Health Services and Delivery Research · doi:10.3310/hsdr03380 · Cited by 297 · see citing works
Staniszewska, S., Adebajo, A., Barber, R., Beresford, P., Brady, L.-M., Brett, J., Elliott, J., Evans, D., Haywood, K. L., Jones, D., et al. (2011) · International Journal of Consumer Studies · doi:10.1111/j.1470-6431.2011.01020.x · Cited by 182 · see citing works
Snape, D., Kirkham, J. J., Britten, N., Froggatt, K. A., Gradinger, F., Lobban, F. A., Popay, J., Wyatt, K. M., & Jacoby, A. (2014) · BMJ Open · doi:10.1136/bmjopen-2014-004943 · Cited by 130 · see citing works
Dudley, L., Gamble, C. L., Preston, J., Buck, D., The EPIC Patient Advisory Group, Hanley, B., Williamson, P. R., & Young, B. (2015) · PLoS ONE · doi:10.1371/journal.pone.0128817 · Cited by 129 · see citing works
Can the impact of public involvement on research be evaluated? A mixed methods study
Barber, R., Boote, J. D., Parry, G. D., Cooper, C. L., Yeeles, P., & Cook, S. (2011) · Health Expectations · doi:10.1111/j.1369-7625.2010.00660.x · Cited by 109 · see citing works
Staley, K., Buckland, S. A., Hayes, H., & Tarpey, M. (2014) · Health Expectations · doi:10.1111/hex.12017 · Cited by 94 · see citing works
Public involvement in research: assessing impact through a realist evaluation
Evans, D., Coad, J. E., Cottrell, K., Dalrymple, J., Davies, R., Donald, C., Laterza, V., Long, A., Longley, A., Moule, P., et al. (2014) · Health Services and Delivery Research · doi:10.3310/hsdr02360 · Cited by 89 · see citing works
Snape, D., Kirkham, J., Preston, J., Popay, J., Britten, N., Collins, M., Froggatt, K., Gibson, A., Lobban, F., Wyatt, K., et al. (2014) · BMJ Open · doi:10.1136/bmjopen-2013-004217 · Cited by 88 · see citing works
Collins, M., Long, R., Page, A., Popay, J., & Lobban, F. A. (2018) · Health Expectations · doi:10.1111/hex.12688 · Cited by 60 · see citing works
Public involvement in research.
Williamson, T. (2013) · PubMed · Cited by 55 · see citing works
Health care: Bring on the evidence
Petit-Zeman, S., & Locock, L. (2013) · Nature · doi:10.1038/501160a · Cited by 31 · see citing works
Self-citationGibson, A., Lewando‐Hundt, G., & Blaxter, L. (2011) · Health Expectations · doi:10.1111/j.1369-7625.2011.00735.x · Cited by 16 · see citing works
Measuring something real and useful in consumer involvement in health and social care research
Purtell, R., & Wyatt, K. M. (2011) · International Journal of Consumer Studies · doi:10.1111/j.1470-6431.2011.01016.x · Cited by 6 · see citing works
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Vat, L. E., Finlay, T., Jan Schuitmaker‐Warnaar, T., Fahy, N., Robinson, P., Boudes, M., Diaz, A., Ferrer, E., Hivert, V., Purman, G., et al. (2020) · Health Expectations · doi:10.1111/hex.12951 · Cited by 173 · see citing works
Lowers, V., Stanley, M., Hennessy, J., Morgan, E., Horsley, R., Vithlani, J., & Harris, R. V. (2026) · Research involvement and engagement · doi:10.1186/s40900-026-00857-w
“Combining experiential knowledge with other skills and lived experience created opportunities for contributors to challenge assumptions and influence the research in ways unlikely to arise from a single form of involvement [42].”
- Authors
- Crocker, J. C., Boylan, A., Bostock, J., & Locock, L.
- Affiliations
- University of Oxford (GB)
- Oxford Health NHS Foundation Trust (GB)
- Corresponding author
- Crocker, Joanna C.
- Venue
- Health Expectations
- Publisher
- Wiley
- Published
- 2016-06-24
- Volume
- 20
- Issue
- 3
- Pages
- 519-528
- ISSN
- 1369-6513 (ISSN-L)
- 1369-7625
- PMC
- PMC5433537
- OpenAlex
- W2460297146
- Cited by
- 194
- References
- 19
- Citations by year
- 2026: 18 · 2025: 19 · 2024: 21 · 2023: 15 · 2022: 21 · 2021: 32 · 2020: 27 · 2019: 25 · 2018: 11 · 2017: 4
- FWCI
- 24.80
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Health Expectations (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, other-oa)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Aberdeen University Research Archive (Aberdeen University) (submittedVersion)
- Funders
- National Institute on Handicapped Research
- Oxford University Hospitals NHS Trust
- University Of Oxford
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Community Health and Development
- Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
- Keywords
- patient and public involvement, health research, impact assessment, lived experience, research participation, co-production of research, stakeholder perspectives
- MeSH terms
- Adult, Aged, Community Participation, Female, United Kingdom, Humans, Interviews as Topic, Male, Middle Aged, Patient Participation, Program Evaluation, Biomedical Research, Qualitative Research
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