Health researchers’ attitudes towards public involvement in health research
Open accessAbstract
OBJECTIVE: To investigate health researchers' attitudes to involving the public in research. BACKGROUND: Public involvement in research is encouraged by the Department of Health in the UK. Despite this, the number of health researchers actively involving the public in research appears to be limited. There is little research specifically addressing the attitudes of health researchers towards involving the public: how they interpret the policy, what motivates and de-motivates them and what their experiences have been to date. DESIGN: A qualitative research design, using semi-structured telephone interviews. SETTING AND PARTICIPANTS: Fifteen purposively sampled UK-based University health researchers were the participants. Interviews were conducted over the telephone. FINDINGS: The participants suggested varying constructions of public involvement in research. Arguments based on moral and political principles and consequentialist arguments for involving the public in research were offered and most participants highlighted the potential benefits of involving the public. However, feelings of apprehension expressed by some participants imply that a number of researchers may still be uncomfortable with involving the public, as it presents a different way of working.
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Different value sets are seen to lead to diverse constructions of PPI and can affect whether or not and how PPI is evaluated.
“However, whichever labels are used to define value sets, it is clear that different value sets are seen to lead to diverse constructions of PPI, 28,174 and can affect whether or not and how PPI is evaluated.52”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [28]
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Cites
(2008) · Springer eBooks · doi:10.1007/978-0-387-77282-0_6 · Cited by 17,410 · see citing works
Goulding, C. (2002) · SAGE Publications Ltd eBooks · doi:10.4135/9781849209236 · Cited by 5,170 · 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
The Third Wave of Science Studies
Collins, H. M., & Evans, R. (2002) · Social Studies of Science · doi:10.1177/0306312702032002003 · Cited by 2,100 · see citing works
Goodrick, D., & Rogers, P. (2015) · doi:10.1002/9781119171386.ch22 · Cited by 1,473 · see citing works
Systematic review of involving patients in the planning and development of health care
Crawford, M., Rutter, D., Manley, C., Weaver, T., Bhui, K. S., Fulop, N., & Tyrer, P. (2002) · BMJ · doi:10.1136/bmj.325.7375.1263 · Cited by 982 · see citing works
See-through Science: Why public engagement needs to move upstream
Wilsdon, J., & Willis, R. (2004) · Lancaster EPrints (Lancaster University) · doi:10.13140/rg.2.1.3844.3681 · Cited by 794 · see citing works
Consumer involvement in health research: a review and research agenda
Boote, J. D., Telford, R., & Cooper, C. L. (2002) · Health Policy · doi:10.1016/s0168-8510(01)00214-7 · Cited by 506 · see citing works
Belief, knowledge and expertise: the emergence of the lay expert in medical sociology
Prior, L. (2003) · Sociology of Health & Illness · doi:10.1111/1467-9566.00339 · Cited by 478 · 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
Lay perspectives: advantages for health research
Entwistle, V. A., Renfrew, M. J., Yearley, S., Forrester, J. M., & Lamont, T. (1998) · BMJ · doi:10.1136/bmj.316.7129.463 · Cited by 376 · 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
Qualitative methods for assessing health care.
Fitzpatrick, R., & Boulton, M. (1994) · Quality in Health Care · doi:10.1136/qshc.3.2.107 · Cited by 298 · 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
Health and Illness in a Changing Society
Bury, M. R. (2013) · Routledge eBooks · doi:10.4324/9781315004020 · Cited by 247 · see citing works
Social Research Methods: A Reader
Seale, C. F. (2019) · Medical Entomology and Zoology · Cited by 231 · see citing works
Public involvement in health care
Florin, D., & Dixon, J. (2004) · BMJ · doi:10.1136/bmj.328.7432.159 · Cited by 212 · see citing works
Health and Illness in a Changing Society
Conrad, P., & Bury, M. R. (1998) · Contemporary Sociology A Journal of Reviews · doi:10.2307/2654542 · Cited by 210 · see citing works
Participation, discourse and power: a case study in service user involvement
Hodge, S. (2005) · Critical Social Policy · doi:10.1177/0261018305051324 · Cited by 152 · see citing works
Medical specialists’ accounts of the impact of the Internet on the doctor/patient relationship
Broom, A. F. (2005) · Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine · doi:10.1177/1363459305052903 · Cited by 150 · see citing works
Public Participation in the New NHS: No Closer to Citizen Control?
Rowe, R., & Shepherd, M. A. (2002) · Social Policy and Administration · doi:10.1111/1467-9515.00251 · Cited by 130 · see citing works
Involving 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
User involvement, research and health inequalities: developing new directions
Beresford, P. (2007) · Health & Social Care in the Community · doi:10.1111/j.1365-2524.2007.00688.x · Cited by 121 · see citing works
Involving consumers in a needs‐led research programme: a pilot project
Oliver, S. R., Milne, R., Bradburn, J., Buchanan, P., Kerridge, L., Walley, T., & Gabbay, J. (2001) · Health Expectations · doi:10.1046/j.1369-6513.2001.00113.x · Cited by 111 · see citing works
Governmentality, Critical Scholarship, and the Medical Humanities
Petersen, A. R. (2003) · Journal of Medical Humanities · doi:10.1023/a:1026002202396 · Cited by 85 · see citing works
Patient and public involvement: What next for the NHS?
Hogg, C. (2007) · Health Expectations · doi:10.1111/j.1369-7625.2006.00427.x · Cited by 80 · 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
McClean, S., & Shaw, A. R. G. (2005) · Qualitative Health Research · doi:10.1177/1049732304273927 · Cited by 76 · see citing works
How can health service users contribute to the NHS research and development programme?
Oliver, S. R. (1995) · BMJ · doi:10.1136/bmj.310.6990.1318 · Cited by 75 · see citing works
User involvement in research: Exploring the challenges
Beresford, P. (2003) · Journal of research in nursing · doi:10.1177/136140960300800106 · Cited by 73 · see citing works
Collaboration in Social Work Practice
Weinstein, J., Whittington, C., & Leiba, T. (2003) · Cited by 70 · see citing works
Developing a model to enhance the capacity of statutory organisations to engage with lay communities
Pickin, C., Popay, J., Staley, K., Bruce, N., Jones, C. B., & Gowman, N. (2002) · Journal of Health Services Research & Policy · doi:10.1258/1355819021927656 · Cited by 67 · see citing works
The research governance framework for health and social care
Eckstein, S. (2003) · Cambridge University Press eBooks · doi:10.1017/cbo9780511550089.031 · Cited by 65 · see citing works
Parents, Power and Public Participation: Sure Start, an Experiment in New Labour Governance
Gustafsson, U., & Driver, S. (2005) · Social Policy and Administration · doi:10.1111/j.1467-9515.2005.00454.x · Cited by 60 · see citing works
The role of users of psychiatric services in service development – influence not power
Campbell, P. (2001) · Psychiatric Bulletin · doi:10.1192/pb.25.3.87 · Cited by 58 · see citing works
A New Voice in Science : Patient participation in decision-making on biomedical research
Caron-Flinterman, J. F. (2005) · Digital Academic REpository of VU University Amsterdam (Vrije Universiteit Amsterdam) · Cited by 56 · see citing works
Rationalising public participation in the health service: the case of research ethics committees
Dyer, S. (2004) · Health & Place · doi:10.1016/j.healthplace.2004.08.004 · Cited by 53 · 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
Involving consumers successfully in NHS research: a national survey
Barber, R., Boote, J. D., & Cooper, C. L. (2007) · Health Expectations · doi:10.1111/j.1369-7625.2007.00457.x · Cited by 47 · see citing works
Self-citationWilliams, G. H. (2000) · Anthropology and Medicine · doi:10.1080/136484700109395 · Cited by 34 · see citing works
Health service staff attitudes to community representatives on committees
Nathan, S., Harris, E., Kemp, L., & Harris‐Roxas, B. (2006) · Journal of Health Organization and Management · doi:10.1108/14777260610702299 · Cited by 27 · 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
Kielmann, T., Tierney, A. J., Porteous, R., Huby, G. Ø., Sheikh, A., & Pinnock, H. (2007) · Journal of the Royal Society of Medicine · doi:10.1258/jrsm.100.5.234 · Cited by 23 · see citing works
Reflections on health care consumerism: insights from feminism
Williamson, C. (1999) · Health Expectations · doi:10.1046/j.1369-6513.1999.00043.x · Cited by 16 · 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: 7
- Martin GP. ÔOrdinary people onlyÕ: knowledge, rep- resentativeness and the publics of public participation in healthcare. Sociology of Health and Illness, 2008; 30: 35-54.
- INVOLVE promoting public involvement in NHS. Public health and social come research 2004. Health researchersÕ attitudes towards public involvement, J Thompson et al. Ó 2009 The Authors. Journal compilation Ó 2009 Blackwell Publishing Ltd Health Expectations, 12, pp.209-220 Available at: http://www.invo.org.uk, accessed on September 2008.
- Rosenberg M, Hovland C. Cognitive, affective and behavioural components of attitudes. In: Hovland C, Rosenberg M (eds) Attitude Organisation and Change. New Haven: Yale University Press, 1960: 1-14.
- Strauss A, Corbin J. Open Coding. In: Seale C (ed.) Social Research Methods: A Reader. London: Routledge, 2004: 303-306.
- Health researchersÕ attitudes towards public involvement, J Thompson et al. Ó 2009 The Authors. Journal compilation Ó 2009 Blackwell Publishing Ltd Health Expectations, 12, pp.209-220
- Chambers R, OÕBrien LM, Linnell S, Sharp S. Why donÕt health researchers report consumer involvement? Quality in Primary Care, 2004; 12: 151-157.
- Health researchersÕ attitudes towards public involvement, J Thompson et al. Ó 2009 The Authors. Journal compilation Ó 2009 Blackwell Publishing Ltd Health Expectations, 12, pp.209-220
Cited by
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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
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
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
“A few researchers perceived a threat of the lay person taking over, an anxiety reported in other studies.(28) The supposed menace of experiential, subjective knowledge overturning scientific notions of neutrality, objectivity and distance(173) has been described in terms of a clash of two worlds.”
Boote, J., Baird, W., & Beecroft, C. (2010) · Health Policy · doi:10.1016/j.healthpol.2009.11.007 · Cited by 234 · see citing works
Boote, J. D., Wong, R., & Booth, A. (2012) · Health Expectations · doi:10.1111/hex.12007 · Cited by 216 · see citing works
Values associated with public involvement in health and social care research: a narrative review
Gradinger, F., Britten, N., Wyatt, K., Froggatt, K., Gibson, A., Jacoby, A., Lobban, F., Mayes, D., Snape, D., Rawcliffe, T., et al. (2013) · Health Expectations · doi:10.1111/hex.12158 · Cited by 177 · see citing works
Patient and Public Engagement in Integrated Knowledge Translation Research: Are we there yet?
Banner, D., Bains, M., Carroll, S. L., Kandola, D. K., Rolfe, D. E., Wong, C., & Graham, I. D. (2019) · Research Involvement and Engagement · doi:10.1186/s40900-019-0139-1 · Cited by 214 · see citing works
Blackburn, S. J., McLachlan, S., Jowett, S. M., Kinghorn, P., Gill, P. S., Higginbottom, A., Rhodes, C., Stevenson, F. A., & Jinks, C. (2018) · Research Involvement and Engagement · doi:10.1186/s40900-018-0100-8 · Cited by 165 · see citing works
Ward, 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
Renedo, A., Marston, C., Spyridonidis, D., & Barlow, J. G. (2014) · Public Management Review · doi:10.1080/14719037.2014.881535 · Cited by 156 · see citing works
Boylan, A. R., Locock, L., Thomson, R., & Staniszewska, S. H. (2019) · Health Expectations · doi:10.1111/hex.12883 · Cited by 154 · see citing works
McCambridge, J., Kypri, K., & Elbourne, D. (2014) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2013.09.004 · Cited by 138 · see citing works
Pellicano, E., Dinsmore, A., & Charman, T. (2014) · PLoS ONE · doi:10.1371/journal.pone.0109946 · Cited by 141 · see citing works
Patient and public involvement in dementia research in the European Union: a scoping review
Miah, J., Dawes, P., Edwards, S., Leroi, I., Starling, B., & Parsons, S. (2019) · BMC Geriatrics · doi:10.1186/s12877-019-1217-9 · Cited by 133 · see citing works
Boote, J. D., Baird, W. O., & Sutton, A. (2011) · Health Policy · doi:10.1016/j.healthpol.2011.05.002 · Cited by 131 · see citing works
Black and minority ethnic group involvement in health and social care research: A systematic review
Dawson, S., Campbell, S., Giles, S. J., Morris, R., & Cheraghi‐Sohi, S. (2017) · Health Expectations · doi:10.1111/hex.12597 · Cited by 125 · see citing works
International palliative care research priorities: A systematic review
Hasson, F., Nicholson, E., Muldrew, D. H. L., Bamidele, O. O., Payne, S. A., & McIlfatrick, S. (2020) · BMC Palliative Care · doi:10.1186/s12904-020-0520-8 · Cited by 123 · see citing works
Patients’ and clinicians’ research priorities
Stewart, R. J., Caird, J., Oliver, K. A., & Oliver, S. R. (2010) · Health Expectations · doi:10.1111/j.1369-7625.2010.00648.x · Cited by 113 · see citing works
Thompson, J., Bissell, P., Cooper, C., Armitage, C. J., & Barber, R. (2012) · Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine · doi:10.1177/1363459312441008 · Cited by 111 · see citing works
Public involvement in research: making sense of the diversity
Oliver, S. R., Liabo, K., Stewart, R. J., & Rees, R. W. (2014) · Journal of Health Services Research & Policy · doi:10.1177/1355819614551848 · Cited by 113 · 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
Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives
Elberse, J., Caron-Flinterman, J. F., & Broerse, J. E. W. (2010) · Health Expectations · doi:10.1111/j.1369-7625.2010.00647.x · Cited by 106 · 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
Open innovation in health care: Analysis of an open health platform
Bullinger, A. C., Rass, M., Adamczyk, S., Moeslein, K. M., & Sohn, S. (2012) · Health Policy · doi:10.1016/j.healthpol.2012.02.009 · Cited by 106 · see citing works
Buck, D., Gamble, C. L., Dudley, L., Preston, J., Hanley, B., Williamson, P. R., Young, B., & The EPIC Patient Advisory Group (2014) · BMJ Open · doi:10.1136/bmjopen-2014-006400 · Cited by 102 · see citing works
Vaidya, A., Shakya, S., & Krettek, A. (2010) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph7062726 · Cited by 98 · see citing works
Boaz, A., Biri, D., & McKevitt, C. (2014) · Health Expectations · doi:10.1111/hex.12295 · Cited by 97 · see citing works
Moore, D. A., Nunns, M., Shaw, L., Rogers, M., Walker, E., Ford, T. J., Garside, R., Ukoumunne, O. C., Titman, P., Shafran, R., et al. (2019) · Health Technology Assessment · doi:10.3310/hta23220 · Cited by 97 · 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
Exploring the Impact of Patient and Public Involvement in a Cancer Research Setting
Thompson, J., Bissell, P., Cooper, C. L., Armitage, C. J., & Barber, R. (2013) · Qualitative Health Research · doi:10.1177/1049732313514482 · Cited by 93 · see citing works
Dawson, S., Ruddock, A., Parmar, V., Morris, R., Cheraghi‐Sohi, S., Giles, S. J., & Campbell, S. (2020) · Research Involvement and Engagement · doi:10.1186/s40900-020-00201-w · Cited by 90 · 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
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/s13063-016-1488-9 · Cited by 86 · see citing works
Engaging consumers in health research: a narrative review
Anderst, J., Conroy, K. M., Fairbrother, G., Hallam, L., McPhail, A., & Taylor, V. (2020) · Australian Health Review · doi:10.1071/ah19202 · Cited by 69 · see citing works
de Wit, M. P. T., Elberse, J., Broerse, J. E. W., & Abma, T. (2013) · Health Expectations · doi:10.1111/hex.12048 · Cited by 66 · 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
Joosten, Y. A., Israel, T. L., Head, A., Vaughn, Y. C., Villalta‐Gil, V., Mouton, C. P., & Wilkins, C. H. (2018) · Journal of Clinical and Translational Science · doi:10.1017/cts.2018.323 · Cited by 67 · see citing works
de Wit, M. P. T., Beurskens, A. J. H. M., Piškur, B., Stoffers, E., & Moser, A. (2018) · Health Expectations · doi:10.1111/hex.12671 · Cited by 64 · see citing works
Involving an individual with lived‐experience in a co‐analysis of qualitative data
Hemming, L., Pratt, D., Bhatti, P., Shaw, J. J., & Haddock, G. (2021) · Health Expectations · doi:10.1111/hex.13188 · Cited by 63 · see citing works
Selman, L. E., Clement, C., Douglas, M., Douglas, K. C., Taylor, J., Metcalfe, C. D., Lane, J. A., & Horwood, J. P. (2021) · Trials · doi:10.1186/s13063-021-05701-y · Cited by 55 · see citing works
Research advisory board members' contributions and expectations in the USA
Pinto, R. M., Spector, A. Y., Rahman, R., & Gastolomendo, J. D. (2013) · Health Promotion International · doi:10.1093/heapro/dat042 · Cited by 50 · see citing works
Westerink, H. J., Oirbans, T., Garvelink, M. M., van Uden‐Kraan, C. F., Zouitni, O., Bart, H. A. J., van der Wees, P. J., & van der Nat, P. B. (2023) · Health Policy · doi:10.1016/j.healthpol.2023.104946 · Cited by 53 · see citing works
Gamble, C. L., Dudley, L., Allam, A., Bell, P. A., Buck, D., Goodare, H., Hanley, B., Preston, J., Walker, A., Williamson, P. R., et al. (2015) · Health Services and Delivery Research · doi:10.3310/hsdr03390 · Cited by 48 · see citing works
Wright, J., Lawton, R., O'Hara, J. K., Armitage, G., Sheard, L., Marsh, C., Grange, A., McEachan, R., Cocks, K., Hrisos, S., et al. (2016) · Programme Grants for Applied Research · doi:10.3310/pgfar04150 · Cited by 48 · see citing works
Public Involvement in the Design and Conduct of Clinical Trials: A Review
Boote, J. D., Baird, W. O., & Sutton, A. (2011) · The International Journal of Interdisciplinary Social Sciences Annual Review · doi:10.18848/1833-1882/cgp/v05i11/59313 · Cited by 48 · 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
Happell, B., Gordon, S., Bocking, J., Ellis, P., Roper, C., Liggins, J., Scholz, B., & Platania‐Phung, C. (2018) · Journal of Mental Health · doi:10.1080/09638237.2018.1466051 · Cited by 45 · see citing works
The burden of proof: The process of involving young people in research
Dovey‐Pearce, G., Walker, S. L. M., Fairgrieve, S., Parker, M., & Rapley, T. (2019) · Health Expectations · doi:10.1111/hex.12870 · Cited by 45 · see citing works
Jewell, A., Pritchard, M., Barrett, K., Green, P. A., Markham, S., McKenzie, S., Oliver, R., Wan, M., Downs, J. M., & Stewart, R. J. (2019) · Research Involvement and Engagement · doi:10.1186/s40900-019-0152-4 · Cited by 43 · see citing works
Béland, S., Lambert, M., Delahunty‐Pike, A., Howse, D., Schwarz, C. M., Chouinard, M., Aubrey‐Bassler, K., Burge, F., Doucet, S. A., Danish, A., et al. (2022) · Health Expectations · doi:10.1111/hex.13542 · Cited by 43 · see citing works
(2020) · De Gruyter eBooks · doi:10.1515/9783110563375 · Cited by 41 · see citing works
Saunders, C., & Girgis, A. (2010) · Health Research Policy and Systems · doi:10.1186/1478-4505-8-34 · Cited by 41 · see citing works
Involving the public in mental health and learning disability research: Can we, should we, do we?
Paul, C., & Holt, J. (2017) · Journal of Psychiatric and Mental Health Nursing · doi:10.1111/jpm.12404 · Cited by 40 · see citing works
Boote, J. D., Dalgleish, M., Freeman, J., Jones, Z., Miles, M. W., & Rodgers, H. (2012) · Health Expectations · doi:10.1111/j.1369-7625.2012.00771.x · Cited by 39 · see citing works
Patient and clinician views on comparative effectiveness research and engagement in research
Forsythe, L. P., Frank, L. B., Walker, K. O., Anise, A., Wegener, N., Weisman, H. F., Hunt, G., & Beal, A. C. (2015) · Journal of Comparative Effectiveness Research · doi:10.2217/cer.14.52 · Cited by 39 · see citing works
Tembo, D., Morrow, E. M., Worswick, L., & Lennard, D. (2019) · Frontiers in Sociology · doi:10.3389/fsoc.2019.00050 · Cited by 36 · see citing works
Teela, L., Verhagen, L. E., van Oers, H. A., Kramer, E. E. W., Daams, J. G., Gruppen, M. P., Santana, M., Grootenhuis, M. A., & Haverman, L. (2023) · Journal of Patient-Reported Outcomes · doi:10.1186/s41687-023-00566-y · Cited by 35 · see citing works
Yu, R., Hanley, B., Denegri, S., Ahmed, J., & McNally, N. (2021) · BMJ Open · doi:10.1136/bmjopen-2020-047995 · Cited by 36 · see citing works
A Critical Discussion of Patient Engagement in Research
Bombak, A. E., & Hanson, H. M. (2017) · Journal of patient-centered research and reviews · doi:10.17294/2330-0698.1273 · Cited by 34 · 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
Chasing cures: Rewards and risks for rare disease patient organisations involved in research
Pinto, D., Martin, D., & Chenhall, R. D. (2017) · BioSocieties · doi:10.1057/s41292-017-0061-4 · Cited by 33 · see citing works
Lander, J., Langhof, H., & Dierks, M. (2019) · PLoS ONE · doi:10.1371/journal.pone.0204187 · Cited by 33 · see citing works
Engaging Stakeholders to Develop a Patient-centered Research Agenda
Haynes, S. C., Rudov, L., Nauman, E., Hendryx, L., Angove, R., & Carton, T. W. (2018) · Medical Care · doi:10.1097/mlr.0000000000000785 · Cited by 32 · see citing works
Heaven, A., Brown, L., Foster, M., & Clegg, A. P. (2016) · Research Involvement and Engagement · doi:10.1186/s40900-016-0044-9 · Cited by 32 · see citing works
Mallidou, A. A., Frisch, N. C., Doyle‐Waters, M. M., MacLeod, M., Ward, J., & Atherton, P. (2018) · Systematic Reviews · doi:10.1186/s13643-018-0762-1 · Cited by 30 · see citing works
The impact of participatory dementia research on researchers: A systematic review
Kowe, A., Panjaitan, H., Klein, O. A., Boccardi, M., Roes, M., Teupen, S., & Teipel, S. J. (2022) · Dementia · doi:10.1177/14713012211067020 · Cited by 30 · see citing works
Erdem, S., Campbell, D., & Thompson, C. A. (2014) · Journal of Health Economics · doi:10.1016/j.jhealeco.2014.06.012 · Cited by 31 · see citing works
A co-produced method to involve service users in research: the SUCCESS model
Evans, B. A., Porter, A. M., Snooks, H. A., & Burholt, V. (2019) · BMC Medical Research Methodology · doi:10.1186/s12874-019-0671-6 · Cited by 30 · 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
Evans, J., & Papoulias, C. (2020) · Research Involvement and Engagement · doi:10.1186/s40900-020-00185-7 · Cited by 25 · see citing works
Aries, A., Bailey, P., & Hunter, S. M. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00330-w · Cited by 26 · see citing works
Pratte, M.-M., Audette-Chapdelaine, S., Auger, A.-M., Wilhelmy, C., & Brodeur, M. (2023) · Research Involvement and Engagement · doi:10.1186/s40900-023-00431-8 · Cited by 28 · see citing works
Moran, R. E., & Davidson, P. (2011) · International Journal of Technology Assessment in Health Care · doi:10.1017/s0266462311000559 · Cited by 26 · see citing works
Modeling the Structure of Partnership Between Researchers and Front-Line Service Providers
Pinto, R. M., Wall, M. M., & Spector, A. Y. (2013) · Journal of Mixed Methods Research · doi:10.1177/1558689813490835 · Cited by 26 · see citing works
Barnish, M. S., Whibley, D., Horton, S., Butterfint, Z., & Deane, K. H. (2016) · Journal of Parkinson s Disease · doi:10.3233/jpd-150757 · Cited by 25 · see citing works
Keenan, J., Poland, F. M., Boote, J. D., Howe, A. C., Wythe, H., Varley, A., Vicary, P., Irvine, L., & Wellings, A. (2019) · PLoS ONE · doi:10.1371/journal.pone.0215953 · Cited by 25 · see citing works
Mental Health Researchers’ Views About Service User Research: A Literature Review
Happell, B., Gordon, S., Bocking, J., Ellis, P., Roper, C., Liggins, J., Platania‐Phung, C., & Scholz, B. (2018) · Issues in Mental Health Nursing · doi:10.1080/01612840.2018.1475524 · Cited by 25 · 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
Coon, J. T., Gwernan‐Jones, R., Moore, D. A., Richardson, M. A., Shotton, C., Pritchard, W., Morris, C., Stein, K., & Ford, T. J. (2015) · Health Expectations · doi:10.1111/hex.12400 · 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
Puerta, L. L., Bartlam, B., & Smith, H. E. (2019) · Health Expectations · doi:10.1111/hex.12915 · Cited by 22 · see citing works
Goodman, C. M., Mathie, E., Cowe, M., Mendoza, A., Westwood, D., Munday, D., Wilson, P. M., Crang, C., Froggatt, K. A., Iliffe, S., et al. (2011) · BMC Palliative Care · doi:10.1186/1472-684x-10-20 · Cited by 22 · see citing works
Parkash, V., Jones, G. L., Martin, N., Steigmann, M., Greensted, E., Kaye, P. M., Layton, A., & Lacey, C. J. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00277-y · Cited by 20 · see citing works
Laterza, V., Evans, D., Davies, R., Donald, C., & Rice, C. (2016) · Research Involvement and Engagement · doi:10.1186/s40900-016-0033-z · Cited by 21 · see citing works
Diet and lupus: what do the patients think?
Robinson, G., McDonnell, T. C. R., Wincup, C., Martin‐Gutierrez, L., Wilton, J., Kalea, A. Z., Ciurtin, C., Pineda‐Torra, I., & Jury, E. C. (2019) · Lupus · doi:10.1177/0961203319845473 · Cited by 21 · see citing works
Viksveen, P., Cardenas, N. E., Ibenfeldt, M., Meldahl, L. G., Krijger, L., Game, J. R., Andvik, M. M., Cuddeford, O., Duerto, S., Mustafa, M., et al. (2021) · Health Expectations · doi:10.1111/hex.13383 · Cited by 20 · see citing works
Health researcher views on comparative effectiveness research and research engagement
Forsythe, L. P., Frank, L. B., Workman, T. A., Borsky, A. E., Hilliard, T. S., Harwell, D., & Fayish, L. (2017) · Journal of Comparative Effectiveness Research · doi:10.2217/cer-2016-0063 · Cited by 19 · see citing works
Exploring patient and public involvement in motor neuron disease research
Musson, L. S., McDermott, C. J., & Hobson, E. (2019) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2019.1643373 · Cited by 19 · see citing works
Engaging participants with research findings: A rights‐informed approach
George, M. S., Gaitonde, R., Davey, R., Mohanty, I., & Upton, P. (2023) · Health Expectations · doi:10.1111/hex.13701 · Cited by 19 · see citing works
Alsaeed, D., Davies, N., Gilmartin‐Thomas, J., Jamieson, E., Kharicha, K., Liljas, A. E. M., Raimi‐Abraham, B. T., Aldridge, J., Smith, F. J., Walters, K. R., et al. (2016) · Research Involvement and Engagement · doi:10.1186/s40900-016-0016-0 · Cited by 19 · see citing works
Long‐term consumer involvement in cancer research: Working towards partnership
Milley, K. M., Chima, S., McIntosh, J., Ackland, E., & Emery, J. D. (2021) · Health Expectations · doi:10.1111/hex.13258 · Cited by 18 · see citing works
Haak, M., Dahlin‐Ivanoff, S., Barenfeld, E., Berge, I., & Lood, Q. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00333-7 · Cited by 18 · see citing works
What does patient engagement mean for Canadian National Transplant Research Program Researchers?
Allard, J., Ballesteros, F., Anthony, S. J., Dumez, V., Hartell, D. P., Knoll, G. A., Wright, L., & Fortin, M. (2018) · Research Involvement and Engagement · doi:10.1186/s40900-018-0096-0 · Cited by 18 · see citing works
User involvement in digital health: Working together to design smart home health technology
Burrows, A., Meller, B., Craddock, I. J., Hyland, F., & Gooberman‐Hill, R. (2018) · Health Expectations · doi:10.1111/hex.12831 · Cited by 20 · see citing works
Kayes, N. M., Martin, R., Bright, F. A. S., Kersten, P., & Pollock, A. (2019) · European Journal of Physical and Rehabilitation Medicine · doi:10.23736/s1973-9087.19.05793-9 · Cited by 17 · see citing works
Dainty, K. N., Seaton, M. B., Cowan, K., Laupacis, A., Dorian, P., Douma, M. J., Garner, J., Goldstein, J., Shire, D., Sinclair, D., et al. (2021) · Resuscitation Plus · doi:10.1016/j.resplu.2021.100148 · Cited by 18 · see citing works
Bench, S. D., Eassom, E., & Poursanidou, K. (2017) · International Journal of Consumer Studies · doi:10.1111/ijcs.12406 · Cited by 17 · see citing works
Stuhlfauth, S., Knutsen, I. R., & Foss, C. (2019) · Health Expectations · doi:10.1111/hex.12875 · Cited by 17 · see citing works
Opportunities for public involvement in big data research in palliative and end-of-life care
Johnson, H., Davies, J. M., Léniz, J., Chukwusa, E., Markham, S., & Sleeman, K. E. (2021) · Palliative Medicine · doi:10.1177/02692163211002101 · Cited by 15 · see citing works
van der Steen, J. T., Bloomer, M. J., & Pereira, S. M. (2021) · Palliative Medicine · doi:10.1177/02692163211069566 · Cited by 16 · see citing works
- Authors
- Thompson, J., Barber, R., Ward, P. R., Boote, J. D., Cooper, C. L., Armitage, C. J., & Jones, G.
- Affiliations
- University of Sheffield (GB)
- Flinders University (AU)
- Corresponding author
- Thompson, Jill
- ORCID
- Venue
- Health Expectations
- Publisher
- Wiley
- Published
- 2009-05-18
- Volume
- 12
- Issue
- 2
- Pages
- 209-220
- ISSN
- 1369-6513 (ISSN-L)
- 1369-7625
- PMC
- PMC5060486
- OpenAlex
- W2161157810
- Cited by
- 208
- References
- 46
- Citations by year
- 2026: 7 · 2025: 11 · 2024: 9 · 2023: 15 · 2022: 15 · 2021: 25 · 2020: 16 · 2019: 20 · 2018: 13 · 2017: 8 · 2016: 9 · 2015: 9 · 2014: 14 · 2013: 13 · 2012: 7
- FWCI
- 14.52
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Health Expectations (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Research Explorer (The University of Manchester) (publishedVersion)
- Flinders Academic Commons (Flinders University) (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
- public involvement in research, citizen participation, research ethics, health research policy
- MeSH terms
- Attitude, Community Participation, Female, United Kingdom, Health Services Research, Humans, Interviews as Topic, Male, Research Personnel
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