Cited by 234Mental Health and Patient InvolvementEthics in Clinical ResearchHealth Policy Implementation Science

The DOI matches its Crossref record; 70 of the 71 references it cites were found in a registry or an index, and 1 are not checked yet.

Patient and public involvement in the design of clinical trials: An overview of systematic reviews

Open access

Price, Amy, Albarqouni, Loai, Kirkpatrick, Jo, Clarke, Mike, Liew, Su May, Roberts, Nia, Burls, Amanda·2018·Journal of Evaluation in Clinical Practice

DOI 10.1111/jep.12805

Open this paper in CoChat — free account Open PDF

Abstract

Background: Funders encourage lay‐volunteer inclusion in research. There are controversy and resistance, given concerns of role confusion, exploratory methods, and limited evidence about what value lay‐volunteers bring to research. This overview explores these areas. Methods: Eleven databases were searched without date or language restrictions for systematic reviews of public and patient involvement (PPI) in clinical trials design. This systematic overview of PPI included 27 reviews from which areas of good and bad practice were identified. Strengths, weaknesses, opportunities, and threats of PPI were explored through use of meta‐narrative analysis. Results: Inclusion criteria were met by 27 reviews ranging in quality from high ( n = 7), medium ( n = 14) to low ( n = 6) reviews. Reviews were assessed using CERQUAL NICE, CASP for qualitative research and CASP for systematic reviews. Four reviews report risk of bias. Public involvement roles were primarily in agenda setting, steering committees, ethical review, protocol development, and piloting. Research summaries, follow‐up, and dissemination contained PPI, with lesser involvement in data collection, analysis, or manuscript authoring. Trialists report difficulty in finding, retaining, and reimbursing volunteers. Respectful inclusion, role recognition, mutual flexibility, advance planning, and sound methods were reported as facilitating public involvement in research. Public involvement was reported to have increased the quantity and quality of patient relevant priorities and outcomes, enrollment, funding, design, implementation, and dissemination. Challenges identified include lack of clarity within common language, roles, and research boundaries, while logistical needs include extra time, training, and funding. Researchers report struggling to report involvement and avoid tokenism. Conclusions: Involving patients and the public in clinical trials design can be beneficial but requires resources, preparation, training, flexibility, and time. Issues to address include reporting deficits for risk of bias, study quality, and conflicts of interests. We need to address these tensions and improve dissemination strategies to increase PPI and health literacy.

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

Crossref · 10.1111/jep.12805

Cites

70 of 71 references verified0 citation errors · 0 not checkable

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?

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Cochrane Handbook for Systematic Reviews of Interventions: Cochrane Book Series
(2008) · doi:10.1002/9780470712184 · Cited by 25,048
The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration
Liberati, A., Altman, D. G., Tetzlaff, J., Mulrow, C., Gotzsche, P. C., Ioannidis, J. P. A., Clarke, M., Devereaux, P. J., Kleijnen, J., & Moher, D. (2009) · BMJ · doi:10.1136/bmj.b2700 · Cited by 17,648
Self-citation
GRADE guidelines: 1. Introduction—GRADE evidence profiles and summary of findings tables
Guyatt, G., Oxman, A. D., Akl, E. A., Kunz, R., Vist, G., Brozek, J., Norris, S., Falck-Ytter, Y., Glasziou, P., & deBeer, H. (2011) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2010.04.026 · Cited by 10,681
Cochrane Handbook for Systematic Reviews of Interventions
Tarsilla, M. (2010) · Journal of MultiDisciplinary Evaluation · doi:10.56645/jmde.v6i14.284 · Cited by 5,232
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
Mapping the impact of patient and public involvement on health and social care research: a systematic review
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
Increasing value and reducing waste in research design, conduct, and analysis
Ioannidis, J. P. A., Greenland, S., Hlatky, M. A., Khoury, M. J., Macleod, M. R., Moher, D., Schulz, K. F., & Tibshirani, R. (2014) · The Lancet · doi:10.1016/s0140-6736(13)62227-8 · Cited by 1,597
Uncovering the Benefits of Participatory Research: Implications of a Realist Review for Health Research and Practice
JAGOSH, J., MACAULAY, A. C., PLUYE, P., SALSBERG, J., BUSH, P. L., HENDERSON, J., SIRETT, E., WONG, G., CARGO, M., HERBERT, C. P., et al. (2012) · The Milbank Quarterly · doi:10.1111/j.1468-0009.2012.00665.x · Cited by 1,268
Knowledge is not power for patients: A systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making
Joseph‐Williams, N., Elwyn, G. J., & Edwards, A. (2013) · Patient Education and Counseling · doi:10.1016/j.pec.2013.10.031 · Cited by 1,244
Methodology in conducting a systematic review of systematic reviews of healthcare interventions
Smith, V., Devane, D., Begley, C. M., & Clarke, M. (2011) · BMC Medical Research Methodology · doi:10.1186/1471-2288-11-15 · Cited by 1,227
Self-citation

Show all 70 references

Research works printed but not linked: 13

The Mendeley Support Team, 2011, Getting Started with Mendeley. Mendeley Desktop, 1
CASP, 2013, Critical Appriasal Skills Programme (CASP) Systematic Review Checklist, 1
National Institute for Health and Care Excellence, 2012, Methods for the development of NICE public health guidence
10.1111/hex.12007 · DOI
BrettJ StaniszewskaS MockfordC SeersK Herron‐marxS BaylissH.The PIRICOM Study: A systematic review of the conceptualisation measurement impact and outcomes of patients and public involvement in health and social care research. University of Warwick.2010.
Stokes G, 2015, Review 3: Community engagement for health via coalitions, collaborations and partnerships ( on‐line social media and social networks) A systematic review and meta‐analysis
Tarpey M, 2014, Public involvement in research applications to the National Research Ethics Service: Comparative analysis of 2010 and 2012 data
Price A, 2016, The evidence informed patient, BMJ, 4
Price A, 2017, Developing tools for practice that support patient choice, The BMJ, 6
Price A, 2017, Cochrane Canada Symposium
Price A, 2017, Building Public Participation in Research. In: FORCE11 Scholarly Communication Institute (FSCI)
10.1111/j.1369-7625.2010.00648.x · DOI
BlazebyJM GargonE AltmanDG ClarkeM WilliamsonPR.The COMET (Core Outcome Measures in Effectiveness Trials) Initiative. Trials Conference: Clinical Trials Methodology Conference.2011;20111004(20111005).

Sorted by citations

Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis
Crocker, J. C., Ricci‐Cabello, I., Parker, A., Hirst, J. A., Chant, A., Petit-Zeman, S., Evans, D., & Rees, S. (2018) · BMJ · doi:10.1136/bmj.k4738 · Cited by 650
CONSORT 2025 explanation and elaboration: updated guideline for reporting randomised trials
Hopewell, S., Chan, A.-W., Collins, G. S., Hróbjartsson, A., Moher, D., Schulz, K. F., Tunn, R., Aggarwal, R., Berkwits, M., Berlin, J. A., et al. (2025) · BMJ · doi:10.1136/bmj-2024-081124 · Cited by 205
Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review
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
Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study
Price, 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
Self-citation
SPIRIT 2025 explanation and elaboration: updated guideline for protocols of randomised trials
Hróbjartsson, A., Boutron, I., Hopewell, S., Moher, D., Schulz, K. F., Collins, G. S., Tunn, R., Aggarwal, R., Berkwits, M., Berlin, J. A., et al. (2025) · BMJ · doi:10.1136/bmj-2024-081660 · Cited by 171
The research burden of randomized controlled trial participation: a systematic thematic synthesis of qualitative evidence
Naidoo, N., Nguyen, V. T., Ravaud, P., Young, B., Amiel, P., Schanté, D., Clarke, M., & Boutron, I. (2020) · BMC Medicine · doi:10.1186/s12916-019-1476-5 · Cited by 144
Self-citation
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
Evaluation of research co-design in health: a systematic overview of reviews and development of a framework
Peters, S., Guccione, L., Francis, J., Best, S., Tavender, E. J., Curran, J., Davies, K., Rowe, S., Palmer, V. J., & Klaic, M. (2024) · Implementation Science · doi:10.1186/s13012-024-01394-4 · Cited by 135
How do nurses use early warning scoring systems to detect and act on patient deterioration to ensure patient safety? A scoping review
Wood, C., Chaboyer, W. P., & Carr, P. J. (2019) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2019.03.012 · Cited by 120
Children and young people’s contributions to public involvement and engagement activities in health-related research: A scoping review
Rouncefield‐Swales, A., Harris, J., Carter, B., Bray, L., Bewley, T., & Martin, R. (2021) · PLoS ONE · doi:10.1371/journal.pone.0252774 · Cited by 115
A Core Outcome Set for Critical Care Ventilation Trials
Blackwood, B., Ringrow, S., Clarke, M. J., Marshall, J. C., Connolly, B. A., Rose, L., & McAuley, D. F. (2019) · Critical Care Medicine · doi:10.1097/ccm.0000000000003904 · Cited by 110
Self-citation
The James Lind Alliance process approach: scoping review
Nygaard, A., Halvorsrud, L., Linnerud, S., Grov, E. K., & Bergland, A. (2019) · BMJ Open · doi:10.1136/bmjopen-2018-027473 · Cited by 106
Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers
Carter, S. A., Gutman, T., Logeman, C., Cattran, D. C., Lightstone, L., Bagga, A., Barbour, S. J., Barratt, J., Boletis, J., Caster, D. J., et al. (2020) · Clinical Journal of the American Society of Nephrology · doi:10.2215/cjn.13101019 · Cited by 100
Researchers, patients, and other stakeholders’ perspectives on challenges to and strategies for engagement
Heckert, A., Forsythe, L. P., Carman, K. L., Frank, L., Hemphill, R., Elstad, E. A., Esmail, L., & Lesch, J. K. (2020) · Research Involvement and Engagement · doi:10.1186/s40900-020-00227-0 · Cited by 130
Patient and Public Involvement in research: A journey to co-production
Price, A., Clarke, M., Staniszewska, S., Chu, L., Tembo, D., Kirkpatrick, M., & Nelken, Y. (2022) · Patient Education and Counseling · doi:10.1016/j.pec.2021.07.021 · Cited by 90
Self-citation
How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors
Lang, I., King, A., Jenkins, G., Boddy, K., Khan, Z., & Liabo, K. (2022) · BMJ Open · doi:10.1136/bmjopen-2022-063356 · Cited by 91
Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers
Jones, J., Cowe, M., Marks, S. A., McAllister, T., Mendoza, A., Ponniah, C., Wythe, H., & Mathie, E. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00295-w · Cited by 78
How to design high quality acupuncture trials—a consensus informed by evidence
Zhang, Y., Jiao, R., Witt, C. M., Lao, L., Liu, J., Thabane, L., Sherman, K. J., Cummings, M., Richards, D. P., Kim, E.-K. A., et al. (2022) · BMJ · doi:10.1136/bmj-2021-067476 · Cited by 80
Who should I involve in my research and why? Patients, carers or the public?
Staley, K., Elliott, J., Stewart, D., & Wilson, R. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00282-1 · Cited by 76
Benefits of Participation in Clinical Trials: An Umbrella Review
Bouzalmate-Hajjaj, A., Massó Guijarro, P., Khan, K. S., Bueno‐Cavanillas, A., & Ibáñez, N. C. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph192215368 · Cited by 71
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
Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking
Moodley, K., & Beyer, C. (2019) · Biopreservation and Biobanking · doi:10.1089/bio.2018.0136 · Cited by 59
Recruitment rates and strategies in exercise trials in cancer survivorship: a systematic review
Reynolds, S. A., O’Connor, L., McGee, A., Kilcoyne, A. Q., Connolly, A., Mockler, D., Guinan, E. M., & O’Neill, L. M. (2023) · Journal of Cancer Survivorship · doi:10.1007/s11764-023-01363-8 · Cited by 56
Patient and public involvement in randomised clinical trials: a mixed-methods study of a clinical trials unit to identify good practice, barriers and facilitators
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
Management of fraudulent participants in online research: Practical recommendations from a randomized controlled feasibility trial
Davies, M. R., Monssen, D., Sharpe, H., Allen, K. L., Simms, B., Goldsmith, K., Byford, S., Lawrence, V. C., & Schmidt, U. H. (2023) · International Journal of Eating Disorders · doi:10.1002/eat.24085 · Cited by 69
National Standards for Public Involvement in Research: missing the forest for the trees
McCoy, M. S., Jongsma, K. R., Friesen, P., Dunn, M., Neuhaus, C. P., Rand, L. Z., & Sheehan, M. (2018) · Journal of Medical Ethics · doi:10.1136/medethics-2018-105088 · Cited by 55
Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics
Vat, L. E., Finlay, T. M. D., Robinson, P., Barbareschi, G., Boudes, M., Ponce, A. M., Dinboeck, M., Eichmann, L., Ferrer, E., Fruytier, S. E., et al. (2021) · Health Expectations · doi:10.1111/hex.13191 · Cited by 53
Patient and Public Involvement and Engagement in a doctoral research project exploring self‐harm in older adults
Troya, M. I., Chew-Graham, C. A., Babatunde, O. O., Bartlam, B., Higginbottom, A., & Dikomitis, L. (2019) · Health Expectations · doi:10.1111/hex.12917 · Cited by 53
Sustaining Meaningful Patient Engagement Across the Lifecycle of Medicines: A Roadmap for Action
Cavaller-Bellaubi, M., Faulkner, S. D., Teixeira, B., Boudes, M., Molero, E., Brooke, N. J., McKeaveney, L., Southerton, J. S., Altabás, M. J. V., Bertelsen, N., et al. (2021) · Therapeutic Innovation & Regulatory Science · doi:10.1007/s43441-021-00282-z · Cited by 52
European Resuscitation Council Guidelines 2025 Ethics in Resuscitation
Raffay, V. I., Wittig, J., Bossaert, L. L., Djakow, J., Djärv, T., Estella, Á., Lulić, I., Mentzelopoulos, S. D., Monsieurs, K. G., de Voorde, P. V., et al. (2025) · Resuscitation · doi:10.1016/j.resuscitation.2025.110734 · Cited by 51
The ethics of patient and public involvement across the research process: towards partnership with people with aphasia
Hersh, D., Israel, M., & Shiggins, C. (2021) · Aphasiology · doi:10.1080/02687038.2021.1896870 · Cited by 47
Patient and public involvement (PPI) in UK surgical trials: a survey and focus groups with stakeholders to identify practices, views, and experiences
Crocker, J. C., Pratt-Boyden, K., Hislop, J., Rees, S., Locock, L., Olszowski, S., Chant, A., Treweek, S. P., Cook, J. A., Woolfall, K., et al. (2019) · Trials · doi:10.1186/s13063-019-3183-0 · Cited by 47
Co-producing Progression Criteria for Feasibility Studies: A Partnership between Patient Contributors, Clinicians and Researchers
Young, H. M. L., Goodliffe, S., Madhani, M., Phelps, K., Regen, E., Locke, A., Burton, J. O., Singh, S. J., Smith, A., & Conroy, S. (2019) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph16193756 · Cited by 48
Trial Forge Guidance 2: how to decide if a further Study Within A Trial (SWAT) is needed
Treweek, S. P., Bevan, S., Bower, P., Briel, M., Campbell, M., Christie, J., Collett, C., Cotton, S. C., Devane, D., Elfeky, A., et al. (2020) · Trials · doi:10.1186/s13063-019-3980-5 · Cited by 46
Self-citation
Where are biomedical research plain‐language summaries?
FitzGibbon, H., King, K., Piano, C., Wilk, C., & Gaskarth, M. (2020) · Health Science Reports · doi:10.1002/hsr2.175 · Cited by 45
Understanding and optimising patient and public involvement in trial oversight: an ethnographic study of eight clinical trials
Coulman, K. D., Nicholson, A., Shaw, A. R. G., Daykin, A. R., Selman, L. E., Macefield, R. C., Shorter, G. W., Cramer, H., Sydes, M. R., Gamble, C. L., et al. (2020) · Trials · doi:10.1186/s13063-020-04495-9 · Cited by 43
A review of reviews exploring patient and public involvement in population health research and development of tools containing best practice guidance
Vinnicombe, S., Bianchim, M. S., & Noyes, J. (2023) · BMC Public Health · doi:10.1186/s12889-023-15937-9 · Cited by 41
Reporting of patient and public involvement and engagement (PPIE) in clinical trials published in nursing science journals: a descriptive study
Gray, R. J., Brasier, C., Zirnsak, T., & Ng, A. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00331-9 · Cited by 39
Learning from patient involvement in a clinical study analyzing PET/CT in women with advanced breast cancer
Vogsen, M., Geneser, S., Rasmussen, M. L., Hørder, M., & Hildebrandt, M. G. (2020) · Research Involvement and Engagement · doi:10.1186/s40900-019-0174-y · Cited by 39
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
Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review
Ellis, U. M., Kitchin, V., & Vis‐Dunbar, M. (2021) · Journal of Participatory Medicine · doi:10.2196/27141 · Cited by 38
Exploring patients’ and physicians’ perspectives about competent health advocacy
LaDonna, K. A., Watling, C. J., Cristancho, S. M., & Burm, S. (2021) · Medical Education · doi:10.1111/medu.14408 · Cited by 38
Priorities of patients, caregivers and health‐care professionals for health research – A systematic review
Levelink, M., Voigt‐Barbarowicz, M., & Brütt, A. L. (2020) · Health Expectations · doi:10.1111/hex.13090 · Cited by 34
Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities
Goulão, B., Bruhn, H., Campbell, M., Ramsay, C. R., & Gillies, K. (2021) · Trials · doi:10.1186/s13063-021-05451-x · Cited by 32
Patient-Oriented Research Competencies in Health (PORCH) for patients, healthcare providers, decision-makers and researchers: protocol of a scoping review
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
Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids
Parry, M. J. E., Bjørnnes, A. K., Toupin‐April, K., Najam, A., Wells, D., Sivakumar, A., Richards, D. P., Ceroni, T., Park, M., Ellis, A. K., et al. (2020) · Patient · doi:10.1007/s40271-020-00460-5 · Cited by 27
Clinical outcome measures in dementia with Lewy bodies trials: critique and recommendations
Rodriguez‐Porcel, F. E., Wyman‐Chick, K. A., Abdelnour, C., Toledo, J. B., Ferreira, D., Urwyler, P., Weil, R. S., Kane, J. P. M., Pilotto, A., Rongve, A., et al. (2022) · Translational Neurodegeneration · doi:10.1186/s40035-022-00299-w · Cited by 28
Comparing the patients’ subjective experiences of acute side effects during radiotherapy for head and neck cancer with four different patient-reported outcomes questionnaires
Holländer-Mieritz, C., Johansen, J., Johansen, C., Vogelius, I. R., Kristensen, C. A., & Pappot, H. (2019) · Acta Oncologica · doi:10.1080/0284186x.2018.1563713 · Cited by 26
Reducing ‘avoidable research waste’ in applied linguistics research: Insights from healthcare research
Isaacs, T., & Chalmers, H. (2023) · Language Teaching · doi:10.1017/s0261444823000411 · Cited by 26
Collaboration between patient organisations and a clinical research sponsor in a rare disease condition: learnings from a community advisory board and best practice for future collaborations
Roennow, A., Sauvé, M., Welling, J., Riggs, R. J., Kennedy, A. T., Galetti, I., Brown, E., Leite, C. C., González, A. V., Guiraud, A. P. P., et al. (2020) · BMJ Open · doi:10.1136/bmjopen-2020-039473 · Cited by 25
Patient-public engagement strategies for health system improvement in sub-Saharan Africa: a systematic scoping review
Ankomah, S. E., Fusheini, A., Ballard, C., Kumah, E., Gurung, G., & Derrett, S. (2021) · BMC Health Services Research · doi:10.1186/s12913-021-07085-w · Cited by 26
Starting a conversation about estimands with public partners involved in clinical trials: a co-developed tool
Cro, S., Kahan, B. C., Patel, A., Henley, A., Joanna, C., Hellyer, P., Kumar, M., Rahman, Y., & Goulão, B. (2023) · Trials · doi:10.1186/s13063-023-07469-9 · Cited by 24
International perspectives on patient involvement in clinical trials in nephrology
Banerjee, D., Lowe‐Jones, R., Damster, S., Thomas, N., Scholes-Robertson, N. J., Tong, A., & Levin, A. (2020) · Kidney International · doi:10.1016/j.kint.2020.06.023 · Cited by 23
Introducing patient and public involvement practices to healthcare research in Austria: strategies to promote change at multiple levels
Kaisler, R. E., Kulnik, S. T., Klager, E., Kletečka-Pulker, M., Schaden, E., & Stainer-Hochgatterer, A. (2021) · BMJ Open · doi:10.1136/bmjopen-2020-045618 · Cited by 23
Assessing public perception of a sand fly biting study on the pathway to a controlled human infection model for cutaneous leishmaniasis
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
Improving completion rates of patient-reported outcome measures in cancer clinical trials: Scoping review investigating the implications for trial designs
van der Weijst, L., Machingura, A., Alanya, A., Lidington, E. K., Velikova, G., Flechtner, H., Schmidt, H., Lehmann, J., Ramage, J. K., Ringash, J. G., et al. (2024) · European Journal of Cancer · doi:10.1016/j.ejca.2024.114313 · Cited by 21
Good to know – This is PPIE ! Development of a training tool for public and patient involvement and engagement in pediatric oncological research
Weiler‐Wichtl, L., Leiss, U., Gojo, J., Kienesberger, A., Hansl, R., Hopfgartner, M., & Schneider, C. (2023) · Cancer Reports · doi:10.1002/cnr2.1835 · Cited by 20
Development and Psychometric Properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): A New Tool to Measure Disease-Specific Distress
Dibley, L. B., Czuber‐Dochan, W., Woodward, S., Wade, T., Bassett, P., Sturt, J. A., Norton, C. S., IBD-DS Patient and Public Involvement Team, Bellamy, A., Cark, C., et al. (2018) · Inflammatory Bowel Diseases · doi:10.1093/ibd/izy108 · Cited by 21
A multi-stakeholder approach to the co-production of the research agenda for medicines optimisation
Fellenor, J., Britten, N., Courtenay, M., Payne, R., Valderas, J. M., Denholm, R., Duncan, P., McCahon, D., Tatnell, L., Fitzgerald, R., et al. (2021) · BMC Health Services Research · doi:10.1186/s12913-021-06056-5 · Cited by 22
Patient and public involvement in oesophageal cancer survivorship research
Schandl, A. R., Mälberg, K., Haglund, L., Arnberg, L., & Lagergren, P. (2021) · Acta Oncologica · doi:10.1080/0284186x.2021.2016950 · Cited by 19
Does reading a book in bed make a difference to sleep in comparison to not reading a book in bed? The People’s Trial—an online, pragmatic, randomised trial
Finucane, E., O’Brien, A., Treweek, S. P., Newell, J., Das, K. K., Chapman, S., Wicks, P. J., Galvin, S., Healy, P., Biesty, L., et al. (2021) · Trials · doi:10.1186/s13063-021-05831-3 · Cited by 25
Moving forward from drug-centred to patient-centred research
Lacombe, D., O'Morain, C. A., Casadei, B., Hill, K. M., Mateus, E. F., Lories, R. J. U., & Brusselle, G. (2019) · European Respiratory Journal · doi:10.1183/13993003.01870-2018 · Cited by 20
Prioritizing Chinese Medicine Clinical Research Questions in Cancer Palliative Care: International Delphi Survey
Wong, C. H. L., Wu, X., Balneaves, L. G., Lo, R. S. K., Witt, C. M., Wu, J. C. Y., Leung, T. H., & Chung, V. C. (2019) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2019.08.002 · Cited by 23
Patient and Public Involvement in Sexual and Reproductive Health: Time to Properly Integrate Citizen’s Input into Science
Garcı́a-Martı́n, M., Amezcua‐Prieto, C., Wattar, B. H. A., Jørgensen, J. S., Bueno‐Cavanillas, A., & Khan, K. S. (2020) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph17218048 · Cited by 18
Patient and public involvement in numerical aspects of trials: a mixed methods theory-informed survey of trialists’ current practices, barriers and facilitators
Goulão, B., Poisson, C., & Gillies, K. (2021) · BMJ Open · doi:10.1136/bmjopen-2020-046977 · Cited by 18
Engaging with patients on research to inform better care
Baker, G. R., McGillion, M. H., & Gavin, F. (2018) · Canadian Medical Association Journal · doi:10.1503/cmaj.180816 · Cited by 17
Reporting of PPI and the MCID in phase III/IV randomised controlled trials—a systematic review
Brennan, J., Poon, M. T. C., Christopher, E., Fulton, O., Porteous, C., & Brennan, P. M. (2023) · Trials · doi:10.1186/s13063-023-07367-0 · Cited by 16
A stakeholder engagement method navigator webtool for clinical and translational science
Kwan, B. M., Ytell, K., Coors, M. E., DeCamp, M. W., Morse, B., Ressalam, J., Reno, J. E., Himber, M., Maertens, J., Wearner, R., et al. (2021) · Journal of Clinical and Translational Science · doi:10.1017/cts.2021.850 · Cited by 15
Key components of successful transition for adolescents born with anorectal malformations–a Nordic focus group study
Tofft, L., Hoel, A. T., Håkansson, C., Zawadzki, A., Gjone, H., Öresland, T., Bjørnland, K., & Stenström, P. (2020) · International Journal of Adolescent Medicine and Health · doi:10.1515/ijamh-2020-0052 · Cited by 16
Patient and Public Involvement in Research: Lessons for Inflammatory Bowel Disease
Honap, S., Buisson, A., Danese, S., Beaugerie, L., & Peyrin‐Biroulet, L. (2023) · Journal of Crohn s and Colitis · doi:10.1093/ecco-jcc/jjad090 · Cited by 14
Self‐compassion as an applicable intervention target for family carers of older adults: A conceptual commentary
Murfield, J., Moyle, W., & O’Donovan, A. (2020) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.5257 · Cited by 21
How can patients shape digital medicine? A rapid review of patient and public involvement and engagement in the development of digital health technologies for neurological conditions
Hanrahan, M., Wilson, C., Keogh, A., Barker, S. B., Rochester, L., Brittain, K., Lumsdon, J., & Ardle, R. M. (2024) · Expert Review of Pharmacoeconomics & Outcomes Research · doi:10.1080/14737167.2024.2410245 · Cited by 14
Realist evaluation of public engagement and involvement in data-intensive health research
Hobbs, G., & Tully, M. P. (2020) · Research Involvement and Engagement · doi:10.1186/s40900-020-00215-4 · Cited by 12
Exploring the Dynamics of a Research Partnership in a Co-Operative Inquiry: A Qualitative Study
Berring, L. L., Buus, N., & Hybholt, L. (2021) · Issues in Mental Health Nursing · doi:10.1080/01612840.2021.1875275 · Cited by 13
Multiple stakeholders' perspectives on patient and public involvement in community mental health services research: A qualitative analysis
Yamaguchi, S., Abe, M., Kawaguchi, T., Igarashi, M., Shiozawa, T., Ogawa, M., Yasuma, N., Sato, S., Miyamoto, Y., & Fujii, C. (2022) · Health Expectations · doi:10.1111/hex.13529 · Cited by 13
Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research
Nguyen, L., Pozniak, K., Strohm, S., Havens, J., Dawe-McCord, C., Thomson, D., Putterman, C., Arafeh, D., Galuppi, B., Ley, A. V.-D., et al. (2024) · Research Involvement and Engagement · doi:10.1186/s40900-024-00543-9 · Cited by 11
Clinical trial recruiters’ experiences working with trial eligibility criteria: results of an exploratory, cross-sectional, online survey in the UK
Cragg, W. J., McMahon, K., Oughton, J. B., Sigsworth, R., Taylor, C., & Napp, V. (2021) · Trials · doi:10.1186/s13063-021-05723-6 · Cited by 12
Patient and Public Involvement and Engagement in the Development of a Platform Clinical Trial for Parkinson’s Disease: An Evaluation Protocol
Zeissler, M., Bakshi, N., Bartlett, M., Batla, A., Byrom, D., Chapman, R., Sally, C., Cowd, E., Deeson, E., Ellis‐Doyle, R., et al. (2024) · Journal of Parkinson s Disease · doi:10.3233/jpd-230444 · Cited by 11
A Systematic Review of Patient and Public Involvement (PPI) in Bariatric Research Trials: The Need for More Work
Musbahi, A., Clyde, D., Small, P., Courtney, M., Mahawar, K. K., Lamb, P., & Robertson, A. G. (2022) · Obesity Surgery · doi:10.1007/s11695-022-06259-7 · Cited by 11
Are People with Aphasia Included in Stroke Trials? A Systematic Review and Narrative Synthesis
Vaughan, E., & Manning, M. (2023) · Clinical Rehabilitation · doi:10.1177/02692155231172009 · Cited by 10
Optimizing expert and patient input in pediatric trial design: Lessons learned and recommendations from a collaboration between conect4children and European Patient‐CEntric ClinicAl TRial PLatforms
Dhaenens, B. A. E., Mahler, F., Batchelor, H. K., Dicks, P., Gaillard, S., Nafría, B., Kopp‐Schneider, A., Ribeiro, M. A., Schwab, M. G., Sparber‐Sauer, M., et al. (2023) · Clinical and Translational Science · doi:10.1111/cts.13547 · Cited by 10
Evaluation of the design and structure of electronic medication labels to improve patient health knowledge and safety: a systematic review
Saif, S., Bui, T. T. T., Srivastava, G., & Quintana, Y. (2024) · Systematic Reviews · doi:10.1186/s13643-023-02413-z · Cited by 10
Enriching a randomized controlled treatment trial for anorexia nervosa by lived experience—Chances and effects of a lived experience council in the SUSTAIN study
Giel, K. E., Bremer, J., Rieß‐Stumm, S., Gregg, B., Fritz, A. J., Klemm, I., Daugelat, M., Schag, K., & the SUSTAIN Study Group (2023) · International Journal of Eating Disorders · doi:10.1002/eat.24050 · Cited by 10
SMOOTH: Self-Management of Open Online Trials in Health analysis found improvements were needed for reporting methods of internet-based trials
Price, A. I., Vasanthan, L., Clarke, M. J., Liew, S. M., Brice, A., & Burls, A. (2018) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2018.08.017 · Cited by 11
Self-citation
Patient and public involvement in an international rheumatology translational research project: an evaluation
de Souza, S., Johansson, E. C., Karlfeldt, S., Raza, K., & Williams, R. A. (2022) · BMC Rheumatology · doi:10.1186/s41927-022-00311-w · Cited by 9
Public involvement in Australian clinical trials: A systematic review
Zirnsak, T., Ng, A., Brasier, C., & Gray, R. J. (2024) · Clinical Trials · doi:10.1177/17407745231224533 · Cited by 10
Learnings from user feedback of a novel digital mental health assessment
Funnell, E. L., Spadaro, B., Benáček, J., Martin-Key, N. A., Metcalfe, T., Olmert, T., Barton‐Owen, G., & Bahn, S. (2022) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2022.1018095 · Cited by 12
“I Assumed It Would Be Somebody Who Had a Stroke That Was Doing This”: Views of Stroke Survivors, Caregivers, and Health Professionals on Tailoring a Relaxation and Mindfulness Intervention
Atkinson, T., Brown, E., Jones, G. L., Sage, K., & Wang, X. (2023) · Healthcare · doi:10.3390/healthcare11030399 · Cited by 9
A global neuronopathic gaucher disease registry (GARDIAN): a patient-led initiative
Collin-Histed, T. L., Stoodley, M., Beusterien, K. M., Elstein, D., Jaffe, D. H., Revel‐Vilk, S., Davies, E. H., & the International Gaucher Alliance (IGA) (2023) · Orphanet Journal of Rare Diseases · doi:10.1186/s13023-023-02828-w · Cited by 9
The applicability of nature-based interventions to support mothers’ postnatal wellbeing: A conceptual review
Hall, K. S., Barnes, C. R., Duggan, L., Walton, S., Moran, P., Turner, K. M., & Evans, J. (2024) · Wellbeing Space and Society · doi:10.1016/j.wss.2024.100187 · Cited by 10
Whose knowledge counts? Involving communities in intervention and trial design using community conversations
Burgess, R. A., Shittu, F., Iuliano, A., Haruna, I., Valentine, P., Bakare, A. A., Colbourn, T., Graham, H., McCollum, E. D., Falade, A. G., et al. (2023) · Trials · doi:10.1186/s13063-023-07320-1 · Cited by 8
Asking those who know their needs best: A framework for active engagement and involvement of childhood cancer survivors and parents in the process of psychosocial research—A workshop report
Weiler‐Wichtl, L., Schneider, C., Gsell, H., Maletzky, A., Kienesberger, A., Röhl, C., Bocolli, A., Gojo, J., Hansl, R., Zettl, A., et al. (2024) · Cancer Reports · doi:10.1002/cnr2.2071 · Cited by 8
Collective Conversational Peer Review of Journal Submission: A Tool to Integrate Medical Education and Practice
Podder, V., Price, A. I., Sivapuram, M. S., Ronghe, A., Katta, S., Gupta, A. K., & Biswas, R. (2018) · Annals of Neurosciences · doi:10.1159/000488135 · Cited by 8
Self-citation
Patient and Public Involvement Refines the Design of ProtOeus: A Proposed Phase II Trial of Proton Beam Therapy in Oesophageal Cancer
Nicholas, O., Joseph, O., Keane, A., Cleary, K., Campbell, S. H., Gwynne, S., Crosby, T. D. L., Radhakrishna, G., & Hawkins, M. (2020) · Patient · doi:10.1007/s40271-020-00487-8 · Cited by 8
Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions
Ramdharry, G. M., Buscemi, V., Boaz, A., Dawes, H., Jaki, T., Jones, F., Marsden, J. F., Paul, L., Playle, R., Randell, E., et al. (2021) · Frontiers in Rehabilitation Sciences · doi:10.3389/fresc.2021.705474 · Cited by 8
Are digital citizen panels an innovative, deliberative approach to cardiovascular research?
Siira, E., & Wolf, A. (2021) · European Journal of Cardiovascular Nursing · doi:10.1093/eurjcn/zvab132 · Cited by 7
Comparing the effects of a patient-designed-and-informed participant information leaflet in comparison with a standard, researcher-designed information leaflet on recruitment, retention and understanding: A study-within-a-trial
Dwyer, C. P., Joyce, R. A., Rogers, F., & Hynes, S. M. (2022) · Contemporary Clinical Trials Communications · doi:10.1016/j.conctc.2022.100936 · Cited by 7
Involving patients and clinicians in the development of a randomised clinical trial protocol to assess spinal manual therapy versus nerve root injection for patients with lumbar radiculopathy: a patient and public involvement project to inform the SALuBRITY trial design
Ryf, C., Hofstetter, L., Clack, L., & Hincapié, C. A. (2024) · Research Involvement and Engagement · doi:10.1186/s40900-023-00536-0 · Cited by 7
The critical need to accelerate cerebral palsy research with consumer engagement, global networks, and adaptive designs
Thomas, S. P., Novak, I., Ritterband‐Rosenbaum, A., Lind, K., Webb, A., Gross, P. H., & McNamara, M. (2024) · Journal of Pediatric Rehabilitation Medicine · doi:10.3233/prm-240014 · Cited by 7
Citizen Consultation on Problematic Usage of the Internet: Ethical Considerations and Empirical Insights From Six Countries
Gjoneska, B., Jones, J., Vella, A. M., Bonanno, P., Flora, K., Fontalba-Navas, A., Hall, N., Ignjatova, L., Kirtava, Z., Sanjuán, D. M., et al. (2021) · Frontiers in Public Health · doi:10.3389/fpubh.2021.587459 · Cited by 7

Authors: Price, A., Albarqouni, L., Kirkpatrick, J., Clarke, M., Liew, S. M., Roberts, N., & Burls, A.
Affiliations: University of Oxford (GB)
Bond University (AU)
Empower‐2‐Go UK and USA
Queen's University Belfast (GB)
University of Malaya (MY)
City, University of London (GB)
Corresponding author: Price, Amy
ORCID: Price, Amy
Albarqouni, Loai
Kirkpatrick, Jo
Clarke, Mike
Liew, Su May
Roberts, Nia
Burls, Amanda
Venue: Journal of Evaluation in Clinical Practice
Publisher: Wiley
Published: 2017-10-27
Volume: 24
Issue: 1
Pages: 240-253
ISSN: 1356-1294 (ISSN-L)
1365-2753
DOI: 10.1111/jep.12805
OpenAlex: W2766144316
Cited by: 234
References: 70
Citations by year: 2026: 23 · 2025: 29 · 2024: 32 · 2023: 34 · 2022: 29 · 2021: 39 · 2020: 23 · 2019: 14 · 2018: 10
FWCI: 2.26
Type: journal article
Language: en
Open access: green
research.bond.edu.au
Licence: other-oa
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations: Journal of Evaluation in Clinical Practice (publishedVersion)
PubMed (publishedVersion)
City Research Online (City University London) (acceptedVersion)
Bond University Research Portal (Bond University) (submittedVersion, other-oa)
Research Portal (Queen's University Belfast) (submittedVersion)
Funders: Public Health Agency (STL/5334/17)
Topics: Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
Keywords: patient and public involvement, clinical trial design, lay volunteers, research ethics committees, trial steering committee, barriers to research participation, tokenism, health literacy, research dissemination, patient-relevant outcomes
MeSH terms: Clinical Trials as Topic, Humans, Patient Participation, Public Opinion, Research Design

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

Patient and public involvement in the design of clinical trials: An overview of systematic reviews

Abstract

Overview

Integrity signals

Verification

Claims the paper makes

Claims other papers make about this one

Self-check

Citations

Cites

Cited by

Related

Metadata

Record

About these checks