Involving consumers successfully in NHS research: a national survey
Open accessAbstract
Objectives To investigate how far and in what way consumers are involved in NHS research. Background There is guidance from the UK Department of Health on involving consumers in research, but it is not known how these policies have been implemented. Design A national postal survey was conducted of 884 researchers selected randomly from the National Research Register, 16 researchers registered on the INVOLVE database and 15 consumers nominated by researchers who collaborated in the same research projects. Setting The survey participants were drawn from diverse settings including NHS organizations and universities. Participants Researchers and consumers collaborating in the same projects. Main outcome measures Details of how consumers were involved and the number of projects that met previously developed consensus‐derived indicators of successful consumer involvement in NHS research. Results Of the 900 researchers who were sent a postal questionnaire, 518 responded, giving a response rate of 58%. Nine of the 15 consumers responded. Eighty‐eight (17%) researchers reported involving consumers, mainly as members of a project steering group, designing research instruments and/or planning or designing the research methods. Most projects met between one and four indicators. Conclusions This national survey revealed that only a small proportion of NHS researchers were actively involving consumers. This study provides a useful marker of how far the Department of Health’s policy on consumer involvement in NHS research has been implemented and in what way.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
It is considered good practice to have public and patient involvement in health research in the UK and many other settings.
“In the UK and many other settings, it is considered good practice to have public and patient involvement in health research [43].”
From Maximising the impact of qualitative research in feasibility studies for randomised controlled trials: guidance for researchers (2015) · cites this paper as [43]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Qualitative data analysis for applied policy research
(2002) · Analyzing Qualitative Data · doi:10.4324/9780203413081-14 · Cited by 4,964 · see citing works
Research governance framework for health and social care
Taylor, M. (2002) · Health & Social Care in the Community · doi:10.1046/j.0966-0410.2001.00336.x · Cited by 798 · see citing works
Oliver, S., Clarke-Jones, L., Rees, R., Milne, R., Buchanan, P., Gabbay, J., Gyte, G., Oakley, A., & Stein, K. (2004) · Health Technology Assessment · doi:10.3310/hta8150 · Cited by 400 · see citing works
Involving the public in NHS public health, and social care research: briefing notes for researchers
Hanley, B., Bradburn, J., Barnes, M., Evans, C., Goodare, H., Kelson, M., Kent, A., Oliver, S. R., Thomas, S. E., & Wallcraft, J. (2004) · Cited by 283 · see citing works
From passive subjects to equal partners
Trivedi, P., & Wykes, T. (2002) · The British Journal of Psychiatry · doi:10.1192/bjp.181.6.468 · Cited by 281 · see citing works
Hanley, B., Truesdale, A., King, A., Elbourne, D., & Chalmers, I. (2001) · BMJ · doi:10.1136/bmj.322.7285.519 · Cited by 184 · see citing works
What does it mean to involve consumers successfully in NHS research? A consensus study
Telford, R., Boote, J. D., & Cooper, C. L. (2004) · Health Expectations · doi:10.1111/j.1369-7625.2004.00278.x · Cited by 182 · see citing works
Self-citationInvolving the Public in NHS, Public Health, and Social Care Research: Briefing Notes For Researchers
Lowry, R. (2004) · BDJ · doi:10.1038/sj.bdj.4811534 · Cited by 123 · see citing works
Boote, J., Barber, R., & Cooper, C. (2006) · Health Policy · doi:10.1016/j.healthpol.2005.03.012 · Cited by 105 · see citing works
Self-citationFaulkner, A. (2000) · A Life in the Day · doi:10.1108/13666282200000013 · Cited by 102 · see citing works
A service users’ research advisory group from the perspectives of both service users and researchers
Rhodes, P., Nocon, A., Booth, M., Chowdrey, M. Y., Fabian, A., Lambert, N., Mohammed, F., & Walgrove, T. (2002) · Health & Social Care in the Community · doi:10.1046/j.1365-2524.2002.00376.x · Cited by 78 · see citing works
Consumer involvement in decisions about what health-related research is funded
O’Donnell, M., & Entwistle, V. (2004) · Health Policy · doi:10.1016/j.healthpol.2004.04.004 · Cited by 54 · see citing works
Andejeski, Y., Bisceglio, I. T., Dickersin, K., Johnson, J. E., Robinson, S. I., Smith, H. S., Visco, F. M., & Rich, I. M. (2002) · Journal of Women s Health & Gender-Based Medicine · doi:10.1089/152460902317586010 · Cited by 54 · see citing works
Consumer involvement in research projects: the activities of research funders
O'Donnell, M. T., & Entwistle, V. A. (2004) · Health Policy · doi:10.1016/j.healthpol.2003.12.011 · Cited by 53 · see citing works
Wyatt, K. M., Carter, M., Mahtani, V. M., Barnard, A., Hawton, A., & Britten, N. (2008) · Family Practice · doi:10.1093/fampra/cmn019 · Cited by 51 · see citing works
(2004) · Nature · doi:10.1038/431883a · Cited by 33 · see citing works
Paterson, C. (2004) · Complementary Therapies in Nursing and Midwifery · doi:10.1016/j.ctnm.2004.02.006 · Cited by 26 · see citing works
Why don't health researchers report consumer involvement?
Chambers, R. M. (2004) · Quality in primary care · Cited by 16 · see citing works
Flagged first, then by citations
Research works printed but not linked: 3
- Chambers R, OÕBrien LM, Linnell S, Sharp S. Why donÕt health researchers report consumer involve- ment?. Quality in Primary Care, 2004; 12: 151-157.
- Faulkner A. The Ethics of Survivor Research. Bristol: Published for the Joseph Rowntree Foundation by the Policy Press, 2004.
- Consumer involvement in health research, R Barber et al. Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd Health Expectations, 10, pp.380-391
Cited by
Sorted by citations
O’Cathain, A., Hoddinott, P., Lewin, S., Thomas, K. J., Young, B., Adamson, J., Jansen, Y. J., Mills, N., Moore, G., & Donovan, J. L. (2015) · Pilot and Feasibility Studies · doi:10.1186/s40814-015-0026-y · Cited by 458 · see citing works
Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned
Forsythe, L. P., Ellis, L. E., Edmundson, L., Sabharwal, R., Rein, A. L., Konopka, K., & Frank, L. B. (2015) · Journal of General Internal Medicine · doi:10.1007/s11606-015-3450-z · Cited by 325 · 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
Health researchers’ attitudes towards public involvement in health research
Thompson, J., Barber, R., Ward, P. R., Boote, J. D., Cooper, C. L., Armitage, C. J., & Jones, G. (2009) · Health Expectations · doi:10.1111/j.1369-7625.2009.00532.x · Cited by 208 · see citing works
Self-citationWard, P. R., Thompson, J., Barber, R., Armitage, C. J., Boote, J. D., Cooper, C. L., & Jones, G. L. (2010) · Journal of Sociology · doi:10.1177/1440783309351771 · Cited by 164 · see citing works
Self-citationPrice, A. I., Schroter, S., Snow, R., Hicks, M. D., Harmston, R., Staniszewska, S. H., Parker, S., & Richards, T. (2018) · BMJ Open · doi:10.1136/bmjopen-2017-020452 · Cited by 155 · see citing works
Evaluating the impact of service user involvement on research: a prospective case study
Barber, R., Beresford, P., Boote, J., Cooper, C., & Faulkner, A. (2011) · International Journal of Consumer Studies · doi:10.1111/j.1470-6431.2011.01017.x · Cited by 107 · see citing works
Self-citationSouth, A., Hanley, B., Gafos, M., Cromarty, B., Stephens, R. J., Sturgeon, K., Scott, K., Cragg, W. J., Tweed, C., Teera, J., et al. (2016) · Trials · doi:10.1186/s13063-016-1488-9 · Cited by 86 · see citing works
Consumer involvement in health research: a <scp>UK</scp> scoping and survey
Mathie, E., Wilson, P., Poland, F., McNeilly, E., Howe, A., Staniszewska, S., Cowe, M., Munday, D., & Goodman, C. (2014) · International Journal of Consumer Studies · doi:10.1111/ijcs.12072 · Cited by 72 · see citing works
Vale, C. L., Thompson, L. C., Murphy, C., Forcat, S., & Hanley, B. (2012) · Trials · doi:10.1186/1745-6215-13-9 · Cited by 72 · see citing works
Edwards, V., Wyatt, K. M., Logan, S., & Britten, N. (2011) · Health Expectations · doi:10.1111/j.1369-7625.2010.00652.x · Cited by 68 · see citing works
The Role of Patient Advocacy Organizations in Shaping Genomic Science
Koay, P. P., & Sharp, R. R. (2013) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-091212-153525 · Cited by 63 · see citing works
Lowes, L., Robling, M. R., Bennert, K., Crawley, C., Hambly, H., Hawthorne, K., Gregory, J. W., & and the DEPICTED Study Team (2010) · Health Expectations · doi:10.1111/j.1369-7625.2010.00625.x · Cited by 49 · see citing works
South, A., Hanley, B., Gafos, M., Cromarty, B., Stephens, R. J., Sturgeon, K., Scott, K., Cragg, W. J., Tweed, C., Teera, J., et al. (2016) · Trials · doi:10.1186/s13063-016-1567-y · Cited by 48 · see citing works
Patient participation in fundamental psychiatric genomics research: a Dutch case study
Baart, I., & Abma, T. (2010) · Health Expectations · doi:10.1111/j.1369-7625.2010.00634.x · Cited by 40 · see citing works
Professionals and the public: power or partnership in health research?
Robinson, L. J., Newton, J. L., & Dawson, P. (2010) · Journal of Evaluation in Clinical Practice · doi:10.1111/j.1365-2753.2010.01572.x · Cited by 33 · see citing works
Developing communities of practice to support the implementation of research into clinical practice
Thomson, L., Schneider, J. M., & Wright, N. (2013) · Leadership in health services · doi:10.1108/17511871311291705 · Cited by 33 · see citing works
Royen, P. V., Beyer, M., Chevallier, P., Eilat‐Tsanani, S., Lionis, C. D., Peremans, L., Petek, D., Rurik, I., Soler, J. K., Stoffers, J., et al. (2010) · European Journal of General Practice · doi:10.3109/13814788.2010.528385 · Cited by 31 · see citing works
Gregory, J. W., Robling, M. R., Bennert, K., Channon, S., Cohen, D. R., Crowne, E. C., Hambly, H., Hawthorne, K., Hood, K., Longo, M., et al. (2011) · Health Technology Assessment · doi:10.3310/hta15290 · Cited by 30 · see citing works
Rayment, J., Lanlehin, R. M., McCourt, C., & Husain, S. M. (2017) · Research Involvement and Engagement · doi:10.1186/s40900-017-0061-3 · Cited by 29 · see citing works
Payne, J., D'Antoine, H. A., France, K. E., McKenzie, A., Henley, N., Bartu, A. E., Elliott, E. J., & Bower, C. I. (2011) · Health Research Policy and Systems · doi:10.1186/1478-4505-9-18 · Cited by 28 · see citing works
Care leavers’ involvement in research: An ethnographic case study on impact
Liabo, K. (2016) · Qualitative Social Work · doi:10.1177/1473325016649255 · Cited by 24 · see citing works
Kylén, M., Slaug, B., Jönsson, O., Iwarsson, S., & Schmidt, S. (2022) · Health Research Policy and Systems · doi:10.1186/s12961-022-00894-3 · Cited by 23 · see citing works
Jamal, F., Langford, R. M., Daniels, P., Thomas, J., Harden, A., & Bonell, C. P. (2014) · Health Expectations · doi:10.1111/hex.12312 · Cited by 23 · see citing works
Unresolved tensions in consumer engagement in CER: a US research perspective
Workman, T. A., Maurer, M. E., & Carman, K. L. (2013) · Journal of Comparative Effectiveness Research · doi:10.2217/cer.13.6 · Cited by 20 · see citing works
Ryan, L., Wenke, R., Carlini, J., Weir, K. A., Shapiro, M., Baglot, N., Tobiano, G., Sargeant, S. J. E., & Hattingh, L. (2024) · Research Involvement and Engagement · doi:10.1186/s40900-024-00604-z · Cited by 20 · see citing works
Tyrer, F., Dunkley, A. J., Spong, R., Gangadharan, S. K., Bhaumik, S., & Khunti, K. K. (2016) · Journal of Policy and Practice in Intellectual Disabilities · doi:10.1111/jppi.12176 · Cited by 16 · see citing works
Dunkley, A. J., Tyrer, F., Spong, R., Gray, L. J., Gillett, M., Doherty, Y., Martin-Stacey, L., Patel, N., Yates, T. E., Bhaumik, S., et al. (2017) · Programme Grants for Applied Research · doi:10.3310/pgfar05110 · Cited by 16 · see citing works
Shrestha, A., Tamrakar, D., Shrestha, B., Karmacharya, B. M., Shrestha, A., Pyakurel, P., & Spiegelman, D. L. (2022) · PLoS ONE · doi:10.1371/journal.pone.0276478 · Cited by 14 · see citing works
Stack, R. J., Mallen, C. D., Deighton, C., Kiely, P. D. W., Shaw, K. L., Booth, A., Kumar, K., Thomas, S., Rowan, I., Horne, R., et al. (2014) · Health Expectations · doi:10.1111/hex.12203 · Cited by 10 · see citing works
Enriching health research through consumer involvement – learning through atypical exemplars
Saunders, C., & Girgis, A. (2011) · Health Promotion Journal of Australia · doi:10.1071/he11196 · Cited by 10 · see citing works
Al‐Omari, B., Sim, J., Croft, P. R., & Frisher, M. (2015) · European Journal for Person Centered Healthcare · doi:10.5750/ejpch.v3i2.975 · Cited by 9 · see citing works
Tullo, E., Robinson, L. J., & Newton, J. L. (2014) · Age and Ageing · doi:10.1093/ageing/afu193 · Cited by 9 · see citing works
Who supports health research in Europe?
McCarthy, M. (2010) · European Journal of Public Health · doi:10.1093/eurpub/ckp222 · Cited by 9 · see citing works
Williams, J. R., Tregear, S., Dusablon, T., Caceda-Castro, L. E., Miller, K. J., Hill, G., & Hennessy, K. D. (2014) · The Journal of Behavioral Health Services & Research · doi:10.1007/s11414-013-9367-6 · Cited by 7 · see citing works
Seidel, B. M., & Bell, E. (2014) · BMC Public Health · doi:10.1186/1471-2458-14-1235 · Cited by 7 · see citing works
The questions we ask – differences between the peer and allied health workforces
Wyder, M., Roennfeldt, H., Kisely, S. R., Ehrlich, C., Lau, G., Vilic, G., Crompton, D., & Dark, F. L. (2020) · Advances in Mental Health · doi:10.1080/18387357.2020.1717360 · Cited by 6 · see citing works
Research Buddy partnership in a MD–PhD program: lessons learned
Gould, D. J., Glanville-Hearst, M., Bunzli, S., Choong, P., & Dowsey, M. M. (2023) · Research Involvement and Engagement · doi:10.1186/s40900-023-00414-9 · Cited by 4 · see citing works
Involving Patients and the Public in Transplantation Research
Hilton, R. M. (2011) · Transplantation · doi:10.1097/tp.0b013e318211d317 · Cited by 3 · see citing works
Promoting Participation and Involvement in Appearance Research
Bates, A. (2012) · Oxford University Press eBooks · doi:10.1093/oxfordhb/9780199580521.013.0049 · Cited by 2 · see citing works
Engagement Methods in Brain Tumor Genomic Research: Multimethod Comparative Study
DeCamp, M. W., Barnard, J. G., Ritger, C., Helmkamp, L. J., Begum, A., Garcia-Hernandez, S., Fischmann, R., Gay, N., Gonzalez-Fisher, R. F., Johnson, K. C., et al. (2025) · Journal of Participatory Medicine · doi:10.2196/68852 · Cited by 1 · see citing works
Exploring the meaning and impact of public involvement in health research
Barber, R. (2014) · White Rose eTheses Online (University of Leeds, The University of Sheffield, University of York) · Cited by 1 · see citing works
Self-citation‘On the inside’: Research in partnership with a client reference group
Lopez, J., Lewis, I., Abello, J., Beattie, M., Mapp, D., Prior, P., & Wood, G. (2010) · Journal of Social Inclusion · doi:10.36251/josi17
The Power of the Consumer Voice in Knowledge Translation of Deprescribing
Ailabouni, N. J., Terrill, B., & Freeman, C. R. (2025) · Advanced clinical pharmacy - research, development and practical applications/Advanced clinical pharmacy - research, development and practical applications · doi:10.1007/978-3-031-77314-3_5
Ryan, L., Wenke, R., Carlini, J., Weir, K. A., Shapiro, M., Baglot, N., Tobiano, G., Sargeant, S. J. E., & Hattingh, L. (2024) · Figshare · doi:10.6084/m9.figshare.26265003
Ryan, L., Wenke, R., Carlini, J., Weir, K. A., Shapiro, M., Baglot, N., Tobiano, G., Sargeant, S. J. E., & Hattingh, L. (2024) · Figshare · doi:10.6084/m9.figshare.26265145
From input to impact: embedding PPI in computational ovarian cancer research
McCabe, A., Carr, B., Hogan, C., Campbell, C., Healy, D., Costello, K., O’Donnell, M., Carroll, P., Gupta, A., & Dean, K. A. (2026) · Research Involvement and Engagement · doi:10.1186/s40900-026-00870-z
- Authors
- Barber, R., Boote, J. D., & Cooper, C. L.
- Affiliations
- Sheffield Health and Social Care NHS Foundation Trust (GB)
- University of Sheffield (GB)
- Venue
- Health Expectations
- Publisher
- Wiley
- Published
- 2007-10-31
- Volume
- 10
- Issue
- 4
- Pages
- 380-391
- ISSN
- 1369-6513 (ISSN-L)
- 1369-7625
- PMC
- PMC5060410
- OpenAlex
- W2152204228
- Cited by
- 47
- References
- 18
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 3 · 2023: 1 · 2022: 2 · 2020: 1 · 2018: 1 · 2017: 2 · 2016: 4 · 2015: 4 · 2014: 7 · 2013: 3 · 2012: 2
- FWCI
- 5.25
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Health Expectations (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- University of Hertfordshire Research Archive (University of Hertfordshire) (acceptedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (submittedVersion)
- University of Hertfordshire Research Archive (University of Hertfordshire) (submittedVersion)
- 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
- consumer involvement in research, patient and public involvement, NHS research, research policy implementation, research design, Department of Health guidance, researcher attitudes
- MeSH terms
- Community Participation, United Kingdom, Humans, National Health Programs, Surveys and Questionnaires, Research
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
