UK research funding bodies’ views towards public participation in health-related research decisions: an exploratory study
Open accessAbstract
BACKGROUND: A challenge facing science is how to renew and improve its relationship with society. One potential solution is to ensure that the public are more involved in the scientific process from the inception of research plans to scientific dissemination strategies. However, to date, little is known about how research funding bodies view public participation in research funding decisions, and how they involve the public into their strategies and practices. This paper provides insights into how key representatives working in the UK non-commercial research funding sector perceive public participation in health-related research funding decisions and the possible implications of these. METHODS: We conducted qualitative semi-structured interviews with 30 key stakeholders from 10 UK non-commercial research funding bodies that either partially or exclusively fund health-related research. The findings were written up in thematic narrative form. RESULTS: The different disciplines that encompass health research, and their differing frames of 'science and society', were found to influence how research funding bodies viewed and implemented public participation in research funding decisions. Relevant subsets of the public were more likely to be involved in research funding decisions than lay public, which could be linked to underlying technocratic rationales. Concerns about public participation stemmed from the highly professionalised scientific environment that the public were exposed to. Additionally, from a more positivist frame, concerns arose regarding subjective views and values held by the public that may damage the integrity of science. CONCLUSION: Underlying assumptions of technocracy largely appear to be driving PP/PE within the research grant review process, even in funding bodies that have overtly democratic ideals. Some conceptions of technocracy were more inclusive than others, welcoming different types of expertise such as patient or research-user experiences and knowledge, while others suggested taking a narrower and more positivist view of expertise as techno-scientific expertise. For research to have its maximum impact when translated into healthcare, health policies and health technologies, there needs to be sensitivity towards multiple frames of knowledge, expertise and underlying values that exist across science and society.
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O'Donnell and Entwistle and van Bekkum and Hilton suggest that funders had many anxieties about PPI such as its 'distorting' the research agenda.
“It should also be noted that O'Donnell and Entwistle 176 and van Bekkum and Hilton 177 suggest that funders had many anxieties about PPI such as its 'distorting' the research agenda.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [177]
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Cites
(2006) · Cited by 18,730 · see citing works
Qualitative research practice: a guide for social science students and researchers
Ruhl, K. (2003) · Choice Reviews Online · doi:10.5860/choice.41-1319 · Cited by 10,514 · see citing works
The New production of knowledge: the dynamics of science and research in contemporary societies
Gibbons, M. (1995) · Choice Reviews Online · doi:10.5860/choice.32-4463 · Cited by 7,049 · see citing works
Constructing grounded theory. A practical guide through qualitative analysis
Brink, E., Dellve, L., Hallberg, U. E., Abrahamsson, K. H., Klingberg, G., & Wentz, K. (2006) · International Journal of Qualitative Studies on Health and Well-Being · doi:10.3402/qhw.v1i3.4932 · Cited by 6,909 · see citing works
Goulding, C. (2002) · SAGE Publications Ltd eBooks · doi:10.4135/9781849209236 · Cited by 5,170 · see citing works
The New Production of Knowledge: The Dynamics of Science and Research in Contemporary Societies.
Baber, Z., Gibbons, M., Limoges, C., Nowotny, H., Schwartzman, S., Scott, P., & Trow, M. A. (1995) · Contemporary Sociology A Journal of Reviews · doi:10.2307/2076669 · Cited by 4,408 · see citing works
Qualitative Psychology: A Practical Guide to Research Methods
Brooks, S. (2008) · QMiP Bulletin · doi:10.53841/bpsqmip.2008.1.6.47 · Cited by 4,360 · see citing works
Strategies of Qualitative Inquiry
Hood, A. (2010) · Canadian Journal of University Continuing Education · doi:10.21225/d5001g · Cited by 3,610 · see citing works
Strategies Of Qualitative Inquiry
Denzin, N. K., & Lincoln, Y. S. (2012) · Cited by 2,833 · see citing works
Qualitative Psychology: A Practical Guide to Research Methods
Smith, J. A. (2015) · Experimental Psychology (formerly Zeitschrift für Experimentelle Psychologie) · doi:10.1027/1618-3169.52.1.80 · Cited by 2,739 · see citing works
Mattley, C. L., Strauss, A., & Corbin, J. M. (1999) · Contemporary Sociology A Journal of Reviews · doi:10.2307/2655359 · Cited by 2,410 · see citing works
A Typology of Public Engagement Mechanisms
Rowe, G., & Frewer, L. J. (2005) · Science Technology & Human Values · doi:10.1177/0162243904271724 · Cited by 1,860 · see citing works
Clarke, A. (2005) · doi:10.4135/9781412985833 · Cited by 1,555 · see citing works
Technologies of Humility: Citizen Participation in Governing Science
Jasanoff, S. (2003) · Minerva · doi:10.1023/a:1025557512320 · Cited by 1,004 · see citing works
Abelson, J., Forest, P., Eyles, J. D., Smith, P., Martin, E., & Gauvin, F. (2003) · Social Science & Medicine · doi:10.1016/s0277-9536(02)00343-x · Cited by 983 · see citing works
Technologies of Humility: Citizen Participation in Governing Science
Jasanoff, S. (2005) · VS Verlag für Sozialwissenschaften eBooks · doi:10.1007/978-3-322-80692-5_17 · Cited by 770 · see citing works
Irwin, A. (2006) · Social Studies of Science · doi:10.1177/0306312706053350 · Cited by 684 · see citing works
Designing Public Participation Processes
Bryson, J. M., Quick, K. S., Slotterback, C. S., & Crosby, B. C. (2013) · Public Administration Review · doi:10.1111/j.1540-6210.2012.02678.x · Cited by 626 · 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
The experiential knowledge of patients: a new resource for biomedical research?
Caron-Flinterman, J. F., Broerse, J. E. W., & Bunders, J. (2004) · Social Science & Medicine · doi:10.1016/j.socscimed.2004.11.023 · Cited by 388 · see citing works
Martin, G. P. (2007) · Sociology of Health & Illness · doi:10.1111/j.1467-9566.2007.01027.x · Cited by 359 · see citing works
Science for all: A reflective essay
Fensham, P. J. (1985) · Journal of Curriculum Studies · doi:10.1080/0022027850170407 · Cited by 340 · see citing works
Machineries for Making Publics: Inscribing and De-scribing Publics in Public Engagement
Felt, U., & Fochler, M. (2010) · Minerva · doi:10.1007/s11024-010-9155-x · Cited by 310 · see citing works
Public engagement coming of age: From theory to practice in STS encounters with nanotechnology
Delgado, A. M., Kjølberg, K. L., & Wickson, F. (2010) · Public Understanding of Science · doi:10.1177/0963662510363054 · Cited by 286 · see citing works
La spécificité du champ scientifique et les conditions sociales du progrès de la raison
Bourdıeu, P. (2002) · Sociologie et sociétés · doi:10.7202/001089ar · Cited by 280 · see citing works
Best research for best health: a new national health research strategy
Evans, T. W. (2006) · Clinical Medicine · doi:10.7861/clinmedicine.6-5-435 · Cited by 271 · see citing works
Litva, A., Coast, J., Donovan, J., Eyles, J. D., Shepherd, M., Tacchi, J., Abelson, J., & Morgan, K. (2002) · Social Science & Medicine · doi:10.1016/s0277-9536(01)00151-4 · Cited by 234 · see citing works
The Cooksey review of UK health research funding
Black, N. A. (2006) · BMJ · doi:10.1136/bmj.39059.444120.80 · Cited by 179 · see citing works
Wynne, B. (2007) · Public Understanding of Science · doi:10.1177/0963662507085162 · Cited by 140 · see citing works
Involving Young Service Users as Co-Researchers: Possibilities, Benefits and Costs
McLaughlin, H. (2005) · The British Journal of Social Work · doi:10.1093/bjsw/bch420 · Cited by 139 · see citing works
Science, Technology, and Democracy
Canan, P., & Kleinman, D. L. (2002) · Contemporary Sociology A Journal of Reviews · doi:10.2307/3089670 · Cited by 136 · see citing works
Michael, M. (2011) · Science Technology & Human Values · doi:10.1177/0162243911428624 · Cited by 136 · see citing works
On the Shoulders of Idiots: Re-thinking Science Communication as ‘Event’
Horst, M., & Michael, M. (2011) · Science as Culture · doi:10.1080/09505431.2010.524199 · Cited by 117 · see citing works
Research, policy and funding – academic treadmills and the squeeze on intellectual spaces1
Smith, K. E. (2010) · British Journal of Sociology · doi:10.1111/j.1468-4446.2009.01307.x · Cited by 115 · see citing works
Hubbard, G., Kidd, L., Donaghy, E., McDonald, C., & Kearney, N. (2006) · Patient Education and Counseling · doi:10.1016/j.pec.2006.02.009 · Cited by 104 · see citing works
The policy science of democracy: The issues of methodology and citizen participation
Waglé, U. R. (2000) · Policy Sciences · doi:10.1023/a:1026500906034 · Cited by 77 · see citing works
Public Knowledge, Public Trust: Understanding the ‘Knowledge Deficit’
Brunk, C. G. (2006) · Public Health Genomics · doi:10.1159/000092654 · Cited by 68 · see citing works
Fostering deliberations about health innovation: What do we want to know from publics?
Lehoux, P., Daudelin, G., Demers‐Payette, O., & Boivin, A. (2009) · Social Science & Medicine · doi:10.1016/j.socscimed.2009.03.017 · Cited by 62 · see citing works
Whitstock, M. T. (2003) · Journal of Evaluation In Clinical Practice · doi:10.1046/j.1365-2753.2003.00376.x · Cited by 54 · 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
Accounting for expertise: Wynne and the autonomy of the lay public actor
Durant, D. (2007) · Public Understanding of Science · doi:10.1177/0963662506076138 · Cited by 47 · see citing works
The UK National Consensus Conference on Plant Biotechnology
Joss, S., & Durant, J. (1995) · Public Understanding of Science · doi:10.1088/0963-6625/4/2/006 · Cited by 46 · see citing works
Langston, A. L., McCallum, M., Campbell, M., Robertson, C., & Ralston, S. H. (2005) · Clinical Trials · doi:10.1191/1740774505cn065oa · Cited by 39 · see citing works
Doing Dialogue: Genre and Flexibility in Public Engagement with Science
Davies, S. R. (2009) · Science as Culture · doi:10.1080/09505430902870591 · Cited by 30 · see citing works
Public engagement in research funding: a study of public capabilities and engagement methodology
Rowe, G., Rawsthorne, D., Scarpello, T. J., & Dainty, J. R. (2009) · Public Understanding of Science · doi:10.1177/0963662508096780 · Cited by 28 · see citing works
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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
Russell, J., Fudge, N., & Greenhalgh, T. (2020) · Research Involvement and Engagement · doi:10.1186/s40900-020-00239-w · Cited by 225 · see citing works
Agyei‐Manu, E., Atkins, N., Lee, B., Rostron, J., Dozier, M., Smith, M. P., & McQuillan, R. (2023) · Health Expectations · doi:10.1111/hex.13787 · Cited by 99 · see citing works
How stakeholder participation can contribute to systematic reviews of complex interventions
Harris, J., Croot, L., Thompson, J., & Springett, J. (2015) · Journal of Epidemiology & Community Health · doi:10.1136/jech-2015-205701 · Cited by 95 · see citing works
Wilson, P. M., Mathie, E., Poland, F. M., Keenan, J., Howe, A. C., Munday, D., Kendall, S. A., Cowe, M., Staniszewska, S. H., & Goodman, C. M. (2018) · Journal of Health Services Research & Policy · doi:10.1177/1355819617750688 · Cited by 51 · see citing works
Pratt, B. (2021) · BMC Medical Ethics · doi:10.1186/s12910-021-00685-5 · Cited by 46 · see citing works
Pratt, B. (2019) · Health Policy and Planning · doi:10.1093/heapol/czz041 · Cited by 43 · see citing works
den Oudendammer, W. M., Noordhoek, J. J., Abma-Schouten, R., van Houtum, L., Broerse, J. E. W., & Dedding, C. W. M. (2019) · Research Involvement and Engagement · doi:10.1186/s40900-019-0163-1 · Cited by 42 · see citing works
Patient and public involvement in research: Enabling meaningful contributions
Ball, S. L., Harshfield, A., Carpenter, A., Bertscher, A., & Marjanovic, S. (2019) · RAND Corporation eBooks · doi:10.7249/rr2678 · Cited by 38 · see citing works
Grant Application Review: The Case of Transparency
Gurwitz, D., Milanesi, E., & Koenig, T. H. (2014) · PLoS Biology · doi:10.1371/journal.pbio.1002010 · Cited by 30 · see citing works
Peer review in funding-by-lottery: A systematic overview and expansion
Shaw, J. (2022) · Research Evaluation · doi:10.1093/reseval/rvac022 · Cited by 30 · see citing works
Public involvement in health research systems: a governance framework
Miller, F. A., Patton, S. J., Dobrow, M., & Berta, W. B. (2018) · Health Research Policy and Systems · doi:10.1186/s12961-018-0352-7 · Cited by 27 · see citing works
Borthwick, J., Evertsz, N., & Pratt, B. (2023) · BMC Medical Ethics · doi:10.1186/s12910-022-00879-5 · Cited by 23 · see citing works
Social Justice and the Ethical Goals of Community Engagement in Global Health Research
Pratt, B. (2019) · Journal of Bioethical Inquiry · doi:10.1007/s11673-019-09948-8 · Cited by 18 · see citing works
Involving patients and the public in research
Darling, E., & Parra, M. A. (2013) · Nurse Researcher · doi:10.7748/nr2013.07.20.6.21.e341 · Cited by 17 · see citing works
Rawson, T. M., Castro‐Sánchez, E., Charani, E., Husson, F., Moore, L. S. P., Holmes, A. H., & Ahmad, R. (2017) · Health Expectations · doi:10.1111/hex.12604 · Cited by 17 · see citing works
Public involvement and health research system governance: a qualitative study
Miller, F. A., Patton, S. J., Dobrow, M., Marshall, D. A., & Berta, W. B. (2018) · Health Research Policy and Systems · doi:10.1186/s12961-018-0361-6 · Cited by 12 · see citing works
Oakman, J., Cahill, L. S., Clune, S., Neilson, C., Shields, N., Tse, T., O’Keefe, S., Frederico, M., Graco, M., Holland, A. E., et al. (2020) · International Journal for Quality in Health Care · doi:10.1093/intqhc/mzaa164 · Cited by 11 · see citing works
Blackburn, S. J., Hine, R., Fairbanks, S., Parkes, P., Murinas, D., Meakin, A., Taylor, R., Parton, L., Jones, M., Tunmore, J., et al. (2023) · Research Involvement and Engagement · doi:10.1186/s40900-023-00508-4 · Cited by 9 · see citing works
Pratt, B., Srinivas, P. N., & Seshadri, T. (2022) · Health Policy and Planning · doi:10.1093/heapol/czac012 · Cited by 8 · see citing works
“Home Thoughts from Abroad”: Reflections on the History of Participatory Health Research in the UK
Springett, J. (2018) · Springer eBooks · doi:10.1007/978-3-319-92177-8_16 · Cited by 5 · see citing works
Challenges to ethical public engagement in research funding: a perspective from practice
Giannelos, K., Wiarda, M., & Doorn, N. (2024) · Open Research Europe · doi:10.12688/openreseurope.18126.1 · Cited by 4 · see citing works
Stage, J., Williams, O., Maria, K., Wadmann, S., Jarden, M., & Robert, G. (2026) · SSM - Qualitative Research in Health · doi:10.1016/j.ssmqr.2026.100734 · Cited by 3 · see citing works
Patient and Family Engagement in Australian and New Zealand Adult Critical Care Trials
Evertsz, N., Baker, A.-M., Bates, S., Betteridge, T., Bihari, S., Buhr, H., Burns, K. E. A., Comitini, M., Deane, A. M., Goldsmith, D., et al. (2025) · Annals of the American Thoracic Society · doi:10.1513/annalsats.202504-371oc · Cited by 2 · see citing works
5 Years of bipolar disorder conversations on Reddit: Methods, key topics and future directions
Poh, C., Head, C., Nunez, J.-J., Lapadat, L., Morton, E., & Michalak, E. (2026) · PLoS ONE · doi:10.1371/journal.pone.0338622 · Cited by 2 · see citing works
Effective and sustainable patient participation
der Staaij, J. J. N.-V. (2022) · doi:10.33540/1621
Too many hats: The challenges of opening up funding agencies to ethical stakeholder participation
Schürz, S., & Fetting, C. (2025) · Open Research Europe · doi:10.12688/openreseurope.18761.1
Tíscar-González, V., Ramos, M. S., Zumárraga, A., & Calvo, E. G. (2025) · Enfermería Clínica · doi:10.1016/j.enfcli.2025.502420
Blackburn, S. J., Hine, R., Fairbanks, S., Parkes, P., Murinas, D., Meakin, A., Taylor, R., Parton, L., Jones, M., Tunmore, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.24439502
Blackburn, S. J., Hine, R., Fairbanks, S., Parkes, P., Murinas, D., Meakin, A., Taylor, R., Parton, L., Jones, M., Tunmore, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26632234
Blackburn, S. J., Hine, R., Fairbanks, S., Parkes, P., Murinas, D., Meakin, A., Taylor, R., Parton, L., Jones, M., Tunmore, J., et al. (2023) · Figshare · doi:10.6084/m9.figshare.24439369
Blackburn, S. J., Hine, R., Fairbanks, S., Parkes, P., Murinas, D., Meakin, A., Taylor, R., Parton, L., Jones, M., Tunmore, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26632237
Tíscar-González, V., Ramos, M. S., Zumárraga, A., & Calvo, E. G. (2026) · Enfermería Clínica (English Edition) · doi:10.1016/j.enfcle.2026.502420
Harthi, H. A., Nabhani, M. S. A., Sabei, S. D. A., A-Amri, A., Hinaai, S. A. A., & Al-Dhuhli, S. (2026) · PLoS ONE · doi:10.1371/journal.pone.0350938
- Authors
- van Bekkum, J. E., & Hilton, S.
- Affiliations
- MRC/CSO Social and Public Health Sciences Unit (GB)
- ORCID
- Hilton, Shona
- Venue
- BMC Health Services Research
- Published
- 2014-07-24
- Volume
- 14
- Issue
- 1
- Pages
- 318-318
- ISSN
- 1472-6963 (ISSN-L)
- PMC
- PMC4115156
- OpenAlex
- W2168410398
- Cited by
- 34
- References
- 46
- Citations by year
- 2026: 4 · 2025: 3 · 2024: 4 · 2023: 4 · 2022: 3 · 2021: 1 · 2020: 2 · 2019: 4 · 2018: 4 · 2017: 1 · 2015: 2 · 2014: 1 · 2013: 1
- FWCI
- 2.41
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Health Services Research (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- ENLIGHTEN (Jurnal Bimbingan dan Konseling Islam) (acceptedVersion)
- Funders
- University of Glasgow (MC_UU_12017/)
- Medical Research Council (MC_UU_12017/6, MC_UU_12017)
- Public Health Research Programme
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Social Sciences › Decision Sciences › Information Systems and Management › Research, Science, and Academia
- Social Sciences › Decision Sciences › Information Systems and Management › Interdisciplinary Research and Collaboration
- Keywords
- research funding agencies, technocracy, positivism, science and society, expertise
- MeSH terms
- Attitude of Health Personnel, Community Participation, Decision Making, United Kingdom, Health Services Research, Humans, Public Opinion, Research Support as Topic, Biomedical Research
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