The impact of patient and public involvement on UK NHS health care: a systematic review
Abstract
PURPOSE: Patient and public involvement (PPI) has become an integral part of health care with its emphasis on including and empowering individuals and communities in the shaping of health and social care services. The aims of this study were to identify the impact of PPI on UK National Health Service (NHS) healthcare services and to identify the economic cost. It also examined how PPI is being defined, theorized and conceptualized, and how the impact of PPI is captured or measured. DATA SOURCES: Seventeen key online databases and websites were searched, e.g. Medline and the King's Fund. STUDY SELECTION: UK studies from 1997 to 2009 which included service user involvement in NHS healthcare services. Date extraction Key themes were identified and a narrative analysis was undertaken. RESULTS OF DATA SYNTHESIS: The review indicates that PPI has a range of impacts on healthcare services. There is little evidence of any economic analysis of the costs involved. A key limitation of the PPI evidence base is the poor quality of reporting impact. Few studies define PPI, there is little theoretical underpinning or conceptualization reported, there is an absence of robust measurement of impact and descriptive evidence lacked detail. CONCLUSION: There is a need for significant development of the PPI evidence base particularly around guidance for the reporting of user activity and impact. The evidence base needs to be significantly strengthened to ensure the full impact of involving service users in NHS healthcare services is fully understood.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
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?
The quality of reporting of patient and public involvement in research papers is often inconsistent and partial, with little information about context, process, and impact.
“While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why.”
From GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research (2017) · cites this paper as [3]
Inadequate reporting of PPI creates problems for systematic reviews that attempt to synthesise PPI evidence.
“Inadequate reporting can create problems for systematic reviews that attempt to synthesise PPI evidence [2–4].”
From GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research (2017) · cites this paper as [3]
The original GRIPP checklist's development drew on systematic review evidence, without broader input from the international PPI research community.
“While the original GRIPP checklist represented an important starting point in creating high quality PPI reporting, its development drew on systematic review evidence, without broader input from the international PPI research community [2–4].”
From GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research (2017) · cites this paper as [3]
It is not possible to be prescriptive about the exact content of each GRIPP2 item because the current evidence base is not advanced enough.
“While GRIPP2-LF and GRIPP2-SF aim to guide consistent reporting, it is not possible to be prescriptive about the exact content of each item, as the current evidence base is not advanced enough to make this possible [2–4, 21].”
From GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research (2017) · cites this paper as [3]
Cites
The new NHS: modern dependable
Warwick, C. (1998) · British Journal of Midwifery · doi:10.12968/bjom.1998.6.4.265 · Cited by 1,228 · 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
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
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
Self-citationA multidimensional conceptual framework for analysing public involvement in health services research
Oliver, S. R., Rees, R. W., Clarke‐Jones, L., Milne, R., Oakley, A., Gabbay, J., Stein, K., Buchanan, P., & Gyte, G. M. (2008) · Health Expectations · doi:10.1111/j.1369-7625.2007.00476.x · Cited by 344 · see citing works
Assessing the promise of user involvement in health service development: ethnographic study
Fudge, N., Wolfe, C. D. A., & McKevitt, C. (2008) · BMJ · doi:10.1136/bmj.39456.552257.be · Cited by 200 · 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
Self-citationCrawford, M., Aldridge, T., Bhui, K. S., Rutter, D., Manley, C., Weaver, T. D., Tyrer, P. J., & Fulop, N. (2003) · Acta Psychiatrica Scandinavica · doi:10.1034/j.1600-0447.2003.00049.x · Cited by 142 · see citing works
Boisot, M. H., Child, J., & Redding, G. (2011) · International Studies of Management and Organization · doi:10.2753/imo0020-8825410103 · Cited by 74 · see citing works
Peck, E., Gulliver, P. J., & Towel, D. (2002) · Cited by 63 · see citing works
Guest editorial: public and user ‘involvement’ in the UK National Health Service
Harrison, S., Dowswell, G., & Milewa, T. (2002) · Health & Social Care in the Community · doi:10.1046/j.1365-2524.2002.00342.x · Cited by 59 · see citing works
Puntis, J. W. L., & Speight, N. (2010) · Archives of Disease in Childhood · doi:10.1136/adc.2010.205294 · Cited by 56 · see citing works
Experience based design: a practical method of working with patients to redesign services
Pickles, J., Hide, E., & Maher, L. M. (2008) · Clinical Governance An International Journal · doi:10.1108/14777270810850634 · Cited by 52 · see citing works
Redesigning mental health services: lessons on user involvement from the Mental Health Collaborative
Robert, G., Hardacre, J., Locock, L., et al. (2003) · Health Expectations · doi:10.1046/j.1369-6513.2003.00209.x · Cited by 51 · see citing works
Are primary care groups and trusts consulting local communities?
Alborz, A., Wilkin, D., & Smith, K. (2002) · Health & Social Care in the Community · doi:10.1046/j.0966-0410.2001.00338.x · Cited by 29 · see citing works
Richardson, A. M., Sitzia, J., & Cotterell, P. (2005) · Health Expectations · doi:10.1111/j.1369-7625.2005.00332.x · Cited by 24 · see citing works
Primary Care Trusts involving the community
Crowley, P., Green, J., Freake, D., et al. (2002) · Journal of Management in Medicine · doi:10.1108/02689230210445121 · Cited by 22 · see citing works
A Colorectal Cancer Patient Focus Group Develops an Information Package
Carney, L., Jones, L. I., Braddon, F., et al. (2006) · Annals of The Royal College of Surgeons of England · doi:10.1308/003588406x114686 · Cited by 22 · see citing works
Milewa, T., Harrison, S. A., Ahmad, W. I. U., & Tovey, P. (2002) · Critical Public Health · doi:10.1080/09581590110113295 · Cited by 21 · see citing works
Dearden-Phillips, C., & Fountain, R. (2005) · British Journal of Learning Disabilities · doi:10.1111/j.1468-3156.2005.00360.x · Cited by 20 · see citing works
Developing an evidence base for patient and public involvement
Murie, J., & Douglas‐Scott, G. (2004) · Clinical Governance An International Journal · doi:10.1108/14777270410552152 · Cited by 15 · see citing works
Reality out of the Rhetoric: Increasing User Involvement in a Mental Health Trust
Perkins, R. E., & Goddard, K. (2004) · Mental Health Review Journal · doi:10.1108/13619322200400006 · Cited by 13 · see citing works
Formative evaluation of the cancer partnership project
Sitzia, J., Cotterell, P., & Richardson, A. M. (2004) · ePrints Soton (University of Southampton) · Cited by 12 · see citing works
Rising to the challenge: a study of patient and public involvement in four primary care trusts
South, J. (2004) · Primary Health Care Research & Development · doi:10.1191/1463423604pc184oa · Cited by 12 · see citing works
Collection of examples of service user and carer participation in systemic reviews
Carr, S., & Coren, E. (2007) · Cited by 9 · see citing works
Evaluating partnerships with cancer patients
Cotterell, P., Sitzia, J., & Richardson, A. M. (2004) · Practice Nursing · doi:10.12968/pnur.2004.15.9.15950 · Cited by 7 · see citing works
Survey of service user involvement in clinical audit
Moore, J. A. (2008) · Clinical Governance An International Journal · doi:10.1108/14777270810892601 · Cited by 5 · see citing works
The role of patient users in cancer genetics services in primary care
Ripley, M., Sullivan, D., & Evans, J. (2007) · Familial Cancer · doi:10.1007/s10689-007-9126-z · Cited by 4 · see citing works
Patient involvement in clinical audit at a primary care trust
Challans, E. (2008) · Journal of Communications In Healthcare · doi:10.1179/cih.2008.1.2.218 · Cited by 4 · see citing works
Challans, E. (2006) · International Journal of Care Coordination · doi:10.1258/j.jicp.2006.136 · Cited by 4 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S., Altman, D. G., Moher, D., Barber, R., Denegri, S., et al. (2017) · BMJ · doi:10.1136/bmj.j3453 · Cited by 1,983 · see citing works
Self-citationPatient 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
Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S., Altman, D. G., Moher, D., Barber, R., Denegri, S., et al. (2017) · Research Involvement and Engagement · doi:10.1186/s40900-017-0062-2 · Cited by 1,643 · see citing works
Self-citationBrett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014) · The Patient - Patient-Centered Outcomes Research · doi:10.1007/s40271-014-0065-0 · Cited by 839 · see citing works
Self-citationOcloo, J., Garfield, S., Franklin, B. D., & Dawson, S. (2021) · Health Research Policy and Systems · doi:10.1186/s12961-020-00644-3 · Cited by 460 · 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
Self-citationPatient and public involvement in the design of clinical trials: An overview of systematic reviews
Price, A., Albarqouni, L., Kirkpatrick, J., Clarke, M., Liew, S. M., Roberts, N., & Burls, A. (2018) · Journal of Evaluation in Clinical Practice · doi:10.1111/jep.12805 · Cited by 234 · see citing works
Social networks – the future for health care delivery
Griffiths, F., Cave, J., Boardman, F., Ren, J., Pawlikowska, T., Ball, R., Clarke, A., & Cohen, A. (2012) · Social Science & Medicine · doi:10.1016/j.socscimed.2012.08.023 · Cited by 196 · see citing works
Self-citationPatient and Public Involvement in Patient-Reported Outcome Measures: Evolution Not Revolution
Staniszewska, S., Haywood, K. L., Brett, J., & Tutton, L. (2012) · The Patient: Patient-Centered Outcomes Research · doi:10.2165/11597150-000000000-00000 · Cited by 196 · see citing works
Self-citationOn the Brink of Genuinely Collaborative Care: Experience-Based Co-Design in Mental Health
Larkin, M., Boden, Z. V. R., & Newton, E. (2015) · Qualitative Health Research · doi:10.1177/1049732315576494 · Cited by 158 · see citing works
Disentangling patient and public involvement in healthcare decisions: why the difference matters
Fredriksson, M., & Tritter, J. Q. (2017) · Sociology of Health & Illness · doi:10.1111/1467-9566.12483 · Cited by 119 · see citing works
Study Protocol for “Psilocybin as a Treatment for Anorexia Nervosa: A Pilot Study”
Spriggs, M. J., Douglass, H. M., Park, R. J., Read, T., Danby, J. L., de Magalhães, F. J. C., Alderton, K. L., Williams, T. M., Blemings, A., Lafrance, A., et al. (2021) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2021.735523 · Cited by 75 · see citing works
Mockford, C. (2015) · Journal of Healthcare Leadership · doi:10.2147/jhl.s70020 · Cited by 24 · see citing works
Self-citation
- Authors
- Mockford, C., Staniszewska, S., Griffiths, F., & Herron-Marx, S.
- Affiliations
- University of Warwick (GB)
- Corresponding author
- Mockford, C.
- Venue
- International Journal for Quality in Health Care
- Publisher
- Oxford University Press (OUP)
- Published
- 2011-11-22
- Volume
- 24
- Issue
- 1
- Pages
- 28-38
- ISSN
- 1353-4505 (ISSN-L)
- 1464-3677
- OpenAlex
- W2112825966
- Cited by
- 570
- References
- 30
- Citations by year
- 2026: 15 · 2025: 29 · 2024: 52 · 2023: 35 · 2022: 59 · 2021: 66 · 2020: 49 · 2019: 50 · 2018: 59 · 2017: 44 · 2016: 37 · 2015: 31 · 2014: 24 · 2013: 12 · 2012: 5
- FWCI
- 2.28
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- International Journal for Quality in Health Care (publishedVersion)
- PubMed (publishedVersion)
- Open Research Online - ORO (The Open University) (submittedVersion)
- Funders
- National Institute for Health and Care Research (CSA03/003)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Health Services Management and Policy
- Health Sciences › Health Professions › General Health Professions › Community Health and Development
- Keywords
- patient and public involvement, service user involvement, National Health Service, impact measurement, reporting quality
- MeSH terms
- Attitude to Health, Community Participation, United Kingdom, Health Services Accessibility, Health Services Administration, Humans, Quality Assurance, Health Care, State Medicine, Information Dissemination
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
