Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review
Open accessAbstract
Background: Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision‐making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. Objective: Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. Search strategy and inclusion criteria: We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut‐off of publications after July 2018. Data extraction and synthesis: Data were extracted from 91 publications, coded and thematically analysed. Main results: A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. Discussion and conclusions: Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.
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The mechanisms through which the benefits of youth engagement are achieved have rarely been articulated or tested.
“Yet, the mechanisms through which these benefits are achieved have rarely been articulated or tested, highlighting the lack of evaluation studies as one of the most critical gaps in the literature.”
From A systematic review of theories, models and frameworks used for youth engagement in health research (2024) · cites this paper as [59]
The Introduction says evaluations of patient engagement have not adequately captured mechanisms of change, and the Discussion says available indicators are insufficient to explain the pathway to impact. This supports the general concern about limited evaluation, but the review concerns patient engagement in medicines research and development, not youth engagement specifically; it also does not establish that mechanisms have rarely been articulated or tested. (LLM, conf=0.86)
Experimental — accuracy not yet measuredThis casts doubt upon the feasibility of adequate dissemination of research information among research-participating communities.
“This casts doubt upon the feasibility of adequate dissemination of research information among research-participating communities. 349”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [349]
The Results section says the review omitted benefits and costs concerning the dissemination of results. Its discussion of accessible information for research participants (Results, “Benefits, costs and challenges for stakeholders”; page unavailable) does not assess whether adequate dissemination to participating communities is feasible. Searched for dissemination and barriers to communicating research information. (LLM, conf=0.78)
Experimental — accuracy not yet measured
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Cites
Using thematic analysis in psychology
Braun, V., & Clarke, V. (2006) · Qualitative Research in Psychology · doi:10.1191/1478088706qp063oa · Cited by 194,414 · see citing works
Scoping studies: towards a methodological framework
Arksey, H., & O'Malley, L. (2005) · International Journal of Social Research Methodology · doi:10.1080/1364557032000119616 · Cited by 36,742 · see citing works
Munn, Z., Peters, M. D. J., Stern, C., Tufanaru, C., McArthur, A., & Aromataris, E. (2018) · BMC Medical Research Methodology · doi:10.1186/s12874-018-0611-x · Cited by 11,385 · see citing works
Guidance for conducting systematic scoping reviews
Peters, M. D. J., Godfrey, C. M., Khalil, H., McInerney, P., Parker, D., & Soares, C. B. (2015) · International Journal of Evidence-Based Healthcare · doi:10.1097/xeb.0000000000000050 · Cited by 7,472 · see citing works
Wohlin, C. (2014) · Proceedings of the 18th International Conference on Evaluation and Assessment in Software Engineering · doi:10.1145/2601248.2601268 · Cited by 4,234 · see citing works
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
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 · see citing works
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 · see citing works
Greenhalgh, T., Hinton, L., Finlay, T., Macfarlane, A., Fahy, N., Clyde, B., & Chant, A. (2019) · Health Expectations · doi:10.1111/hex.12888 · Cited by 1,059 · see citing works
Self-citationEvaluating Public-Participation Exercises: A Research Agenda
Rowe, G., & Frewer, L. J. (2004) · Science Technology & Human Values · doi:10.1177/0162243903259197 · Cited by 882 · see citing works
Brett, 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
Evaluating patient and stakeholder engagement in research: moving from theory to practice
Esmail, L., Moore, E., & Rein, A. (2015) · Journal of Comparative Effectiveness Research · doi:10.2217/cer.14.79 · Cited by 502 · see citing works
Manafò, E., Petermann, L., Mason-Lai, P., & Vandall‐Walker, V. (2018) · Health Research Policy and Systems · doi:10.1186/s12961-018-0282-4 · Cited by 483 · see citing works
De Las Nueces, D., Hacker, K., DiGirolamo, A., & Hicks, L. S. (2012) · Health Services Research · doi:10.1111/j.1475-6773.2012.01386.x · Cited by 400 · see citing works
Studying the Organisation and Delivery of Health Services: Research Methods
Goodwin, N. (2002) · Health & Social Care in the Community · doi:10.1046/j.1365-2524.2002.03832.x · Cited by 386 · see citing works
The Patient-as-Partner Approach in Health Care
Karazivan, P., Dumez, V., Flora, L., Pomey, M., Grande, C. D., Ghadiri, D. P., Fernández, N., Jouet, E., Vergnas, O. L., & Lebel, P. (2015) · Academic Medicine · doi:10.1097/acm.0000000000000603 · Cited by 386 · see citing works
‘Is it worth doing?’ Measuring the impact of patient and public involvement in research
Staley, K. (2015) · Research Involvement and Engagement · doi:10.1186/s40900-015-0008-5 · Cited by 363 · see citing works
A 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
Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned
Forsythe, L. P., Ellis, L. E., Edmundson, L., Sabharwal, R., Rein, A. L., Konopka, K., & Frank, L. B. (2015) · Journal of General Internal Medicine · doi:10.1007/s11606-015-3450-z · Cited by 325 · see citing works
Patient and public engagement in priority setting: A systematic rapid review of the literature
Manafò, E., Petermann, L., Vandall‐Walker, V., & Mason-Lai, P. (2018) · PLoS ONE · doi:10.1371/journal.pone.0193579 · Cited by 289 · see citing works
Boivin, A., L'Espérance, A., Gauvin, F., Dumez, V., Macaulay, A. C., Lehoux, P., & Abelson, J. (2018) · Health Expectations · doi:10.1111/hex.12804 · Cited by 285 · see citing works
Impact of patient involvement in mental health research: longitudinal study
Ennis, L., & Wykes, T. (2013) · The British Journal of Psychiatry · doi:10.1192/bjp.bp.112.119818 · Cited by 284 · see citing works
Priority setting: what constitutes success? A conceptual framework for successful priority setting
Sibbald, S. L., SINGER, P. A., Upshur, R. E. G., & Martin, D. K. (2009) · BMC Health Services Research · doi:10.1186/1472-6963-9-43 · Cited by 251 · see citing works
Patient 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
Forsythe, L. P., Heckert, A., Margolis, M. K., Schrandt, S., & Frank, L. B. (2017) · Quality of Life Research · doi:10.1007/s11136-017-1581-x · Cited by 218 · see citing works
Crocker, J. C., Boylan, A., Bostock, J., & Locock, L. (2017) · Health Expectations · doi:10.1111/hex.12479 · Cited by 194 · 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
The prevalence of patient engagement in published trials: a systematic review
Fergusson, D. A., Monfaredi, Z., Pussegoda, K., Garritty, C., Lyddiatt, A., Shea, B., Duffett, L. D., Ghannad, M., Montroy, J. R., Murad, M. H., et al. (2018) · Research Involvement and Engagement · doi:10.1186/s40900-018-0099-x · Cited by 182 · see citing works
Patient engagement: What partnering with patient in research is all about
Duffett, L. D. (2016) · Thrombosis Research · doi:10.1016/j.thromres.2016.10.029 · Cited by 173 · 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
Levitan, B. S., Getz, K. A., Eisenstein, E. L., Goldberg, M., Harker, M. J., Hesterlee, S. E., Patrick‐Lake, B., Roberts, J. N., & DiMasi, J. A. (2017) · Therapeutic Innovation & Regulatory Science · doi:10.1177/2168479017716715 · Cited by 158 · see citing works
Staley, K., & Barron, D. (2019) · Research Involvement and Engagement · doi:10.1186/s40900-019-0147-1 · Cited by 157 · see citing works
PUBLIC AND PATIENT INVOLVEMENT IN HEALTH TECHNOLOGY ASSESSMENT: A FRAMEWORK FOR ACTION
Abelson, J., Wagner, F., DeJean, D., Boesveld, S. E., Gauvin, F.-P., Bean, S., Axler, R. E., Petersen, S., Baidoobonso, S. M., Pron, G. E., et al. (2016) · International Journal of Technology Assessment in Health Care · doi:10.1017/s0266462316000362 · Cited by 149 · see citing works
Improving Patient Involvement in Medicines Research and Development: A Practical Roadmap
Geißler, J., Ryll, B., di Priolo, S. L., & Uhlenhopp, M. (2017) · Therapeutic Innovation & Regulatory Science · doi:10.1177/2168479017706405 · Cited by 141 · see citing works
Dudley, L., Gamble, C. L., Preston, J., Buck, D., The EPIC Patient Advisory Group, Hanley, B., Williamson, P. R., & Young, B. (2015) · PLoS ONE · doi:10.1371/journal.pone.0128817 · Cited by 129 · 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
Caron-Flinterman, J. F., Broerse, J. E. W., Teerling, J., & Bunders, J. (2005) · Health Expectations · doi:10.1111/j.1369-7625.2005.00337.x · Cited by 108 · see citing works
Self-citationThe impact of service user involvement in research
Minogue, V., Boness, J., Brown, A., & Girdlestone, J. (2005) · International Journal of Health Care Quality Assurance · doi:10.1108/09526860510588133 · Cited by 104 · see citing works
Strengthening stakeholder-engaged research and research on stakeholder engagement
Ray, K. N., & Miller, E. P. (2017) · Journal of Comparative Effectiveness Research · doi:10.2217/cer-2016-0096 · Cited by 101 · see citing works
Measuring the impact of patient and public involvement: the need for an evidence base
Staniszewska, S. H., Herron‐Marx, S., & Mockford, C. (2008) · International Journal for Quality in Health Care · doi:10.1093/intqhc/mzn044 · Cited by 100 · see citing works
Staley, K., Buckland, S. A., Hayes, H., & Tarpey, M. (2014) · Health Expectations · doi:10.1111/hex.12017 · Cited by 94 · see citing works
Lindenmeyer, A., Hearnshaw, H., Sturt, J. A., Ormerod, R., & Aitchison, G. (2007) · Health Expectations · doi:10.1111/j.1369-7625.2007.00451.x · Cited by 88 · see citing works
A model and measure for quality service user involvement in health research
Morrow, E. M., Ross, F., Grocott, P., & Bennett, J. (2010) · International Journal of Consumer Studies · doi:10.1111/j.1470-6431.2010.00901.x · Cited by 86 · see citing works
Mann, C., Chilcott, S., PLUMB, K. H. M., Brooks, E., & Man, M. (2018) · Research Involvement and Engagement · doi:10.1186/s40900-018-0098-y · Cited by 77 · see citing works
Changing what researchers 'think and do': Is this how involvement impacts on research?
Staley, K. (2017) · Research for All · doi:10.18546/rfa.01.1.13 · Cited by 74 · see citing works
Vale, C. L., Thompson, L. C., Murphy, C., Forcat, S., & Hanley, B. (2012) · Trials · doi:10.1186/1745-6215-13-9 · Cited by 72 · see citing works
Making Patient Engagement a Reality
Pushparajah, D. S. (2017) · Patient · doi:10.1007/s40271-017-0264-6 · Cited by 69 · see citing works
Dillon, E. C., Tuzzio, L., Madrid, S., Olden, H. A., & Greenlee, R. T. (2017) · Journal of patient-centered research and reviews · doi:10.17294/2330-0698.1458 · Cited by 68 · see citing works
Caron-Flinterman, J. F., Broerse, J. E. W., Teerling, J., van Alst, M. L. Y., Klaasen, S., Swart, L., & Bunders, J. (2006) · Science and Public Policy · doi:10.3152/147154306781778993 · Cited by 67 · see citing works
Self-citationBerglas, S., Jutai, L., MacKean, G., & Weeks, L. (2016) · Research Involvement and Engagement · doi:10.1186/s40900-016-0036-9 · Cited by 67 · see citing works
Collins, M., Long, R., Page, A., Popay, J., & Lobban, F. A. (2018) · Health Expectations · doi:10.1111/hex.12688 · Cited by 60 · 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
Iliffe, S., McGrath, T., & Mitchell, D. J. (2011) · Health Expectations · doi:10.1111/j.1369-7625.2011.00728.x · Cited by 54 · see citing works
Andejeski, Y., Bisceglio, I. T., Dickersin, K., Johnson, J. E., Robinson, S. I., Smith, H. S., Visco, F. M., & Rich, I. M. (2002) · Journal of Women s Health & Gender-Based Medicine · doi:10.1089/152460902317586010 · Cited by 54 · see citing works
Wyatt, K. M., Carter, M., Mahtani, V. M., Barnard, A., Hawton, A., & Britten, N. (2008) · Family Practice · doi:10.1093/fampra/cmn019 · Cited by 51 · see citing works
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
ASSESSING THE IMPACTS OF CITIZEN DELIBERATIONS ON THE HEALTH TECHNOLOGY PROCESS
Abelson, J., Bombard, Y., Gauvin, F., Simeonov, D., & Boesveld, S. E. (2013) · International Journal of Technology Assessment in Health Care · doi:10.1017/s0266462313000299 · Cited by 45 · see citing works
Brown, K., Dyas, J., Chahal, P., Khalil, Y., Riaz, P., & Cummings-Jones, J. (2006) · Europe PMC (PubMed Central) · Cited by 44 · see citing works
Guarino, P., Elbourne, D. R., Carpenter, J. R., & Peduzzi, P. N. (2006) · Clinical Trials · doi:10.1191/1740774506cn133oa · Cited by 44 · see citing works
McKevitt, C., Fudge, N., & Wolfe, C. D. A. (2009) · Health Expectations · doi:10.1111/j.1369-7625.2009.00573.x · Cited by 40 · see citing works
EVALUATION OF PATIENT INVOLVEMENT IN A HEALTH TECHNOLOGY ASSESSMENT
Dipankui, M. T., Gagnon, M., Desmartis, M., Légaré, F., Piron, F., Gagnon, J., Rhiands, M., & Coulombe, M. (2015) · International Journal of Technology Assessment in Health Care · doi:10.1017/s0266462315000240 · Cited by 40 · see citing works
Service User Involvement in Social Work Research: Learning from an Adoption Research Project
Cossar, J., & Neil, E. (2013) · The British Journal of Social Work · doi:10.1093/bjsw/bct108 · Cited by 39 · see citing works
de Wit, M. P. T., Abma, T., Loon, M. S. K.-V., Collins, S., & Kirwan, J. (2013) · The Journal of Rheumatology · doi:10.3899/jrheum.130816 · Cited by 36 · see citing works
Vale, C. L., Tierney, J. F., Spera, N., Whelan, A., Nightingale, A. L., & Hanley, B. (2012) · Systematic Reviews · doi:10.1186/2046-4053-1-23 · Cited by 33 · see citing works
Pittens, C. A. C. M., Noordegraaf, A. V., van Veen, S. C., Anema, J. R., Huirne, J. A. F., & Broerse, J. E. W. (2013) · Health Expectations · doi:10.1111/hex.12121 · Cited by 32 · see citing works
Self-citationSofolahan-Oladeinde, Y., Newhouse, R. P., Lavallee, D. C., Huang, J. C., & Mullins, C. D. (2017) · Family Practice · doi:10.1093/fampra/cmx013 · Cited by 28 · see citing works
Establishing Return-on-Investment Expectations for Patient-Centric Initiatives
Getz, K. A. (2015) · Therapeutic Innovation & Regulatory Science · doi:10.1177/2168479015579521 · Cited by 27 · see citing works
Evans, D., Bird, E. L., Gibson, A., Grier, S., Chin, T. L., Stoddart, M., MacGowan, A. P., & Panel, T. N. B. M. P. (2017) · Health Expectations · doi:10.1111/hex.12587 · Cited by 23 · see citing works
Borup, G., Bach, K. F., Schmiegelow, M., Wallach‐Kildemoes, H., Bjerrum, O. J., & Westergaard, N. (2016) · Therapeutic Innovation & Regulatory Science · doi:10.1177/2168479015622668 · Cited by 21 · see citing works
Service user reflections on the impact of involvement in research
Gordon, J., Franklin, S., & Eltringham, S. A. (2018) · Research Involvement and Engagement · doi:10.1186/s40900-018-0095-1 · Cited by 20 · see citing works
Evaluation of Patient Involvement in HTA
Gagnon, M., Dipankui, M. T., & DeJean, D. (2017) · Springer eBooks · doi:10.1007/978-981-10-4068-9_16 · Cited by 11 · see citing works
A Patient Centricity Team Tool to Enable Patient-Focused Drug Development
Ashkenazy, R., & Schneider, R. F. (2016) · Therapeutic Innovation & Regulatory Science · doi:10.1177/2168479016640563 · Cited by 5 · see citing works
Public led online trials and participatory action research: Why do we need them?
Price, A. I. (2016) · European Journal for Person Centered Healthcare · doi:10.5750/ejpch.v4i2.1095 · Cited by 2 · see citing works
Flagged first, then by citations
Research works printed but not linked: 5
- [8]Wilson P, Mathie E, Keenan J, et al. Research with patient and public involvement: a realist evaluation – the RAPPORT study. Southampton (UK): NIHR Journals Library; 2015. https://www.journalslibrary.nihr.ac.uk/hsdr/hsdr03380/#/plain-english-summary. Accessed June 10, 2019. 26378332
- [27]Evans D, Coad J, Cottrell K, et al. Public involvement in research: assessing impact through a realist evaluation. Southampton (UK): NIHR Journals Library; 2014 http://www.ncbi.nlm.nih.gov/books/NBK260168/. Accessed October 6, 2019. 25642514
- [55]Brett J, Staniszewska S, Mockford C, Seers K, Herron‐Marx S, Bayliss H. The PIRICOM study. 2010 http://www.ukcrc.org/wp-content/uploads/2014/03/Piricom+Review+Final+2010.pdf. Accessed October 6, 2019.
- [67]Public Involvement Impact Assessment Framework (PiiAF) Study Group. Tabular summary of findings from a review of reported impacts of public involvement in research from PiiAF study group’s evidence review. 2013 http://piiaf.org.uk/documents/impacts-summary-1113.pdf. Accessed August 23, 2018.
- [91]Drug Information Association (DIA). Capturing the value of patient engagement. 2017 https://www.diaglobal.org/en/resources/press-releases/2016/10-31-patient-engagement-study. Accessed June 7, 2018.
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Beames, J. R., Kikas, K., O'Gradey-Lee, M., Gale, N., Werner-Seidler, A., Boydell, K. M., & Hudson, J. L. (2021) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2021.763005 · Cited by 99 · see citing works
Adus, S., Macklin, J. A., & Pinto, A. D. (2023) · BMC Health Services Research · doi:10.1186/s12913-023-10098-2 · Cited by 99 · see citing works
Vanstone, M. G., Canfield, C., Evans, C., Leslie, M., Levasseur, M. A., MacNeil, M., Pahwa, M., Panday, J., Rowland, P., Taneja, S., et al. (2023) · Health Research Policy and Systems · doi:10.1186/s12961-022-00954-8 · Cited by 79 · see citing works
Gobat, N., Slack, C., Hannah, S., Salzwedel, J., Bladon, G., Burgos, J. G., Purvis, B., Molony-Oates, B., Siegfried, N., Cheah, P. Y., et al. (2025) · The Lancet Global Health · doi:10.1016/s2214-109x(24)00521-7 · Cited by 61 · see citing works
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Feldman, D., Kruger, P., Delbecque, L., Duenas, A., Bernard-Poenaru, O., Wollenschneider, S., Hicks, N., Reed, J. A., Sargeant, I., Pakarinen, C., et al. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00294-x · Cited by 46 · see citing works
Fox, G., Lalu, M. M., Sabloff, T., Nicholls, S. G., Smith, M. P., Stacey, D., Almoli, F., & Fergusson, D. A. (2023) · Research Involvement and Engagement · doi:10.1186/s40900-023-00488-5 · Cited by 44 · see citing works
Practices of patient engagement in drug development: a systematic scoping review
Zvonareva, O., Craveț, C., & Richards, D. P. (2022) · Research Involvement and Engagement · doi:10.1186/s40900-022-00364-8 · Cited by 41 · see citing works
Vat, L. E., Warren, M., Goold, S. D., Davidge, E., Porter, N., Schuitmaker‐Warnaar, T. J., Broerse, J. E. W., & Etchegary, H. (2020) · Research Involvement and Engagement · doi:10.1186/s40900-020-00206-5 · Cited by 40 · see citing works
Self-citationHaroutounian, S., Holzer, K. J., Kerns, R. D., Veasley, C., Dworkin, R. H., Turk, D. C., Carman, K. L., Chambers, C. T., Cowan, P., Edwards, R. R., et al. (2023) · Pain · doi:10.1097/j.pain.0000000000003121 · Cited by 42 · see citing works
Kent, E. E., Park, E. M., Wood, W. A., Bryant, A. L., & Mollica, M. A. (2021) · Journal of Clinical Oncology · doi:10.1200/jco.21.00226 · Cited by 38 · see citing works
A systematic review of theories, models and frameworks used for youth engagement in health research
Sanchez, S., Thorburn, R., Rea, M., Kaufman, P., Schwartz, R., Selby, P., & Chaiton, M. (2024) · Health Expectations · doi:10.1111/hex.13975 · Cited by 35 · see citing works
L’Espérance, A., O’Brien, N., Grégoire, A., Abelson, J., Canfield, C., Grande, C. D., Dogba, M. J., Fancott, C. A., Levasseur, M. A., Loignon, C., et al. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00255-4 · Cited by 36 · see citing works
Long-term follow-up after authorization of gene therapy: leveraging real-world data
de Haart, K., Asao, K., Ataher, Q., Geier, J. K., Hillen, J. B., Huang, K., Mol, P. G. M., Rivera, D. R. R., Wang, H., Yang, H. Y., et al. (2025) · Drug Discovery Today · doi:10.1016/j.drudis.2025.104337 · Cited by 34 · see citing works
Tools for assessing health research partnership outcomes and impacts: a systematic review
Mrklas, K., Boyd, J., Shergill, S., Merali, S., Khan, M., Nowell, L. S., Goertzen, A., Pfadenhauer, L. M., Paul, K., Sibley, K. M., et al. (2023) · Health Research Policy and Systems · doi:10.1186/s12961-022-00937-9 · Cited by 36 · see citing works
Ethik der Reanimation und Entscheidungen am Lebensende
Mentzelopoulos, S. D., Couper, K., de Voorde, P. V., Druwé, P., Blom, M. T., Perkins, G. D., Lulić, I., Djakow, J., Raffay, V. I., Lilja, G., et al. (2021) · Notfall + Rettungsmedizin · doi:10.1007/s10049-021-00888-8 · Cited by 32 · see citing works
Building a culture of engagement at a research centre for childhood disability
Pozniak, K., Buchanan, F., Cross, A., Crowson, J., Galuppi, B., Grahovac, D., Gorter, J. W., Hlyva, O., Ketelaar, M., de Camargo, O. K., et al. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00319-5 · Cited by 31 · see citing works
Snowball, E., Loughlin, R. F., Eagleson, H., Barnett, K. M., McLellan, E., O’Connor, D., Kelly, C. M., Thelker, C., McGilton, K. S., & Bethell, J. (2022) · Research Involvement and Engagement · doi:10.1186/s40900-022-00359-5 · Cited by 29 · see citing works
Sibley, K. M., Hoekstra, F., Kothari, A. R., & Mrklas, K. (2022) · doi:10.1002/9781119757269.ch4 · Cited by 29 · see citing works
Faulkner, S. D., Sayuri, S., Pakarinen, C., Somers, F., Edo, M. J. V., Remón, L. P., Ponce, A. M., Gove, D., Ferrer, E., Nafría, B., et al. (2021) · Health Expectations · doi:10.1111/hex.13207 · Cited by 28 · see citing works
Self-citationMrklas, K., Merali, S., Khan, M., Shergill, S., Boyd, J. M., Nowell, L. S., Pfadenhauer, L. M., Paúl, K., Goertzen, A., Swain, L. A., et al. (2022) · Health Research Policy and Systems · doi:10.1186/s12961-022-00938-8 · Cited by 25 · see citing works
Vanderhout, S. M., Nevins, P., Nicholls, S. G., Macarthur, C., Brehaut, J. C., Potter, B. K., Gillies, K., Goulão, B., Smith, M. P., Hilderley, A. J., et al. (2023) · CMAJ Open · doi:10.9778/cmajo.20220198 · Cited by 24 · see citing works
Partnering with patients in clinical trials of pain treatments: a narrative review
Holzer, K. J., Veasley, C., Kerns, R. D., Edwards, R. R., Gewandter, J. S., Langford, D. J., Yaeger, L., McNicol, E. D., Ferguson, M. C., Turk, D. C., et al. (2022) · Pain · doi:10.1097/j.pain.0000000000002600 · Cited by 20 · see citing works
Gorbenko, O., Cavillon, P., Giles, R. H., Kolarova, T., Marks, M., Cardone, A., Bagga, S. K., & Nolan, C. (2022) · Research Involvement and Engagement · doi:10.1186/s40900-022-00334-0 · Cited by 20 · see citing works
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 · see citing works
Aggarwal, V. R., Wu, J., Fox, F., Howdon, D., Guthrie, E., & Mighell, A. J. (2021) · Journal of Oral Rehabilitation · doi:10.1111/joor.13229 · Cited by 18 · see citing works
Institutionalizing Reflexivity for Sustainability: Two Cases in Health Care
Schuitmaker‐Warnaar, T. J., Gunn, C. J., Regeer, B. J., & Broerse, J. E. W. (2021) · Sustainability · doi:10.3390/su132111712 · Cited by 14 · see citing works
Self-citationFruytier, S. E., Vat, L. E., Camp, R., Houÿez, F., Keyser, H. D., Dunne, D., Marchi, D., McKeaveney, L., Pitt, R. H., Pittens, C. A. C. M., et al. (2022) · Journal of patient-centered research and reviews · doi:10.17294/2330-0698.1859 · Cited by 15 · see citing works
Self-citationMarshall, D. A., Suryaprakash, N., Bryan, S., Barker, K. L., MacKean, G., Zelinsky, S., McCarron, T. L., Santana, M., Moayyedi, P., & Lavallee, D. C. (2023) · Journal of the Canadian Association of Gastroenterology · doi:10.1093/jcag/gwad045 · Cited by 14 · see citing works
Younus, M. M., Alkhakany, M., Bahri, P., Caro-Rojas, A., Rostom, H., Ndagije, H. B., & Elhawary, M. A. (2023) · Drug Safety · doi:10.1007/s40264-023-01313-4 · Cited by 13 · see citing works
Dews, S.-A., Daley, R., Bansal, A., Preston, J., & Böhm, N. (2023) · Current Medical Research and Opinion · doi:10.1080/03007995.2023.2295984 · Cited by 15 · see citing works
Critical reflection in team‐based practice: A narrative review
Edelist, T., Friesen, F., Ng, S., Fernández, N., Bélisle, M., Lechasseur, K., Rochette, A., Vachon, B., & Caty, M. (2024) · Medical Education · doi:10.1111/medu.15462 · Cited by 14 · see citing works
Odat, R. M., Marsool, M. D. M., Nguyen, D. H., Idrees, M., Hussein, A. M., Ghabally, M., Yasin, J. A., Hanifa, H., Sabet, C. J., Định, N. H., et al. (2024) · International Journal of Surgery · doi:10.1097/js9.0000000000002003 · Cited by 13 · see citing works
Adolescents' experiences with patient engagement in respiratory medicine
Groot, B. C., Dedding, C. W. M., Slob, E. M. A., Maitland, H., Teunissen, T., Rutjes, N. W. P., & Vijverberg, S. J. H. (2020) · Pediatric Pulmonology · doi:10.1002/ppul.25150 · Cited by 12 · see citing works
Faulkner, S. D., Pittens, C. A. C. M., Goedhart, N. S., Davies, E. H., Manning, E., Diaz-Ponce, A. M., Edo, M. J. V., Remón, L. P., Husain, L., Huberman, K., et al. (2021) · Therapeutic Innovation & Regulatory Science · doi:10.1007/s43441-021-00313-9 · Cited by 12 · see citing works
Self-citationDelivering Digital Health Solutions that Patients Need: A Call to Action
Popa, V., Geißler, J., Vermeulen, R., Priest, E., Capperella, K., Susuzlu, G., Terry, S. F., & Brooke, N. J. (2023) · Therapeutic Innovation & Regulatory Science · doi:10.1007/s43441-023-00592-4 · Cited by 11 · see citing works
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 · see citing works
Studying How Patient Engagement Influences Research: A Mixed Methods Study
Marshall, D. A., Suryaprakash, N., Lavallee, D. C., McCarron, T. L., Zelinsky, S., Barker, K. L., MacKean, G., Santana, M., Moayyedi, P., & Bryan, S. (2024) · Patient · doi:10.1007/s40271-024-00685-8 · Cited by 11 · see citing works
Protocol for a scoping review to map patient engagement in scoping reviews
Oravec, N., Monnin, C., Gregora, A., Bjorklund, B., Dave, M. G., Schultz, A. S. H., & Chudyk, A. M. (2022) · Research Involvement and Engagement · doi:10.1186/s40900-022-00361-x · Cited by 10 · see citing works
MacNeil, M., Abelson, J., Moore, C., Lindsay, S., Adams, J., Alshaikhahmed, A., Jain, K. K., Petrie, P., & Ganann, R. (2023) · Research Involvement and Engagement · doi:10.1186/s40900-023-00523-5 · Cited by 11 · see citing works
Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement
Merker, V. L., Lessing, A. J., Moss, I., Hussey, M., Oberlander, B., Rose, T., Thalheimer, R. D., Wirtanen, T., Wolters, P. L., Gross, A. M., et al. (2021) · Neurology · doi:10.1212/wnl.0000000000012430 · Cited by 10 · see citing works
Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter
Michaud, S., Needham, J., Sundquist, S., Johnson, D., Hanna, S., Hosseinzadeh, S., Bartekian, V., Steele, P., Benchimol, S., Ross, N., et al. (2021) · Current Oncology · doi:10.3390/curroncol28020137 · Cited by 10 · see citing works
Anderson, N. N., Dong, K., Baker, G. R., Moody, L., Scane, K., Urquhart, R., Wodchis, W. P., & Gagliardi, A. R. (2022) · BMC Health Services Research · doi:10.1186/s12913-022-07747-3 · Cited by 8 · see citing works
Labrie, N., Kunneman, M., van Veenendaal, N. R., van Kempen, A. A. M. W., & van Vliet, L. (2023) · Patient Education and Counseling · doi:10.1016/j.pec.2023.107715 · Cited by 7 · see citing works
Acting on sex and gender in medical innovation is good for business
Vijayasingham, L., Bischof, E. Y., Ateghang-Awankem, B., Rumaney, M. B., del Barrio, M. O., Cheah, P. Y., Meulen, A. S.-T., Tannenbaum, C., Morgan, R., & Wolfe, J. (2023) · BMJ · doi:10.1136/bmj-2022-072242 · Cited by 7 · see citing works
Abousifein, M. E., Falbo, A., Luyckx, J., Abelson, J., Ganann, R., Vrkljan, B. H., & Carusone, S. C. (2024) · Research Involvement and Engagement · doi:10.1186/s40900-024-00595-x · Cited by 7 · see citing works
Markowitz, B., de Sequeira, S., Najam, A., Pritlove, C., Greenberg, D. T., Greenberg, M., Chan, C.-M., Lakhanpal, G., Jagadeesh, S., Mukerji, G., et al. (2024) · JMIR Diabetes · doi:10.2196/60190 · Cited by 7 · see citing works
Castonguay, G., Bédard, S., Dubois, A., Lessard, É., Rivard, L., Rouly, G., & Boivin, A. (2025) · Research Involvement and Engagement · doi:10.1186/s40900-025-00689-0 · Cited by 7 · see citing works
Walsh, C. M., Jones, N. L., McCreath, G. A., Connan, V., Pires, L., Chen, A. Q. H., Karoly, A., & Macarthur, C. (2022) · Frontiers in Pediatrics · doi:10.3389/fped.2022.849959 · Cited by 7 · see citing works
Co-Design with Patients for Improving Patient Safety: Strategies, Barriers and pitfalls
Xiao, Y., Miller, K., Werner, N. E., Smith, K. M., Hendrix, N., & Hemmelgarn, C. (2023) · Proceedings of the Human Factors and Ergonomics Society Annual Meeting · doi:10.1177/21695067231192416 · Cited by 7 · see citing works
Engler, J., Engler, F., Gerber, M., Brosse, F., Voigt, K., & Mergenthal, K. (2024) · Health Expectations · doi:10.1111/hex.14094 · Cited by 6 · see citing works
Morassaei, S., Campbell, M., & Prospero, L. D. (2021) · Journal of Continuing Education in the Health Professions · doi:10.1097/ceh.0000000000000405 · Cited by 7 · see citing works
Mrklas, K., Boyd, J. M., Shergill, S., Merali, S., Khan, M., Moser, C., Nowell, L. S., Goertzen, A., Swain, L. A., Pfadenhauer, L. M., et al. (2023) · Health Research Policy and Systems · doi:10.1186/s12961-023-00958-y · Cited by 7 · see citing works
Oravec, N., Schultz, A. S. H., Bjorklund, B., Gregora, A., Monnin, C., Dave, M. G., Duhamel, T. A., Arora, R. C., & Chudyk, A. M. (2022) · International Journal of Qualitative Methods · doi:10.1177/16094069221124402 · Cited by 6 · see citing works
Marcu, A., McGregor, F., Egan, B., Hill, K. M., Cook, T. M., & Arber, A. (2023) · Research Involvement and Engagement · doi:10.1186/s40900-023-00426-5 · Cited by 6 · see citing works
Alkhatib, A. J., AlZoubi, A., Alharoun, M., Alawnah, A. B., Aqoulah, A. A., & Mandili, A. (2024) · Multicriteria Algorithms with Applications · doi:10.61356/j.mawa.2024.311661 · Cited by 6 · see citing works
Vervoort, J. P. M., Konijn, W. S., Jansen, D. E. M. C., Boersma, C., de Zeeuw, J., Ho-dac-Pannekeet, M. M., Gansevoort, R. T., Messchendorp, A. L., Sanders, J., & de Wildt-Liesveld, R. (2024) · Research Involvement and Engagement · doi:10.1186/s40900-024-00622-x · Cited by 4 · see citing works
Schoemaker, C., Schalkers, I., de Jong, B. A., Wissink, W., le Loux, S., Buijsen, R. A. M., Russcher, K., van der Steeg, F. A. M., Blom, J., & Vroonland, E. (2024) · Research Involvement and Engagement · doi:10.1186/s40900-024-00646-3 · Cited by 4 · see citing works
Mirt, P. K., Erjavec, K., Krsnik, S., Kotnik, P., & Hussein, M. (2024) · BMC Family Practice · doi:10.1186/s12875-024-02690-0 · Cited by 5 · see citing works
Percudani, M., Iardino, R., Porcellana, M., Lisoni, J., Brogonzoli, L., Barlati, S., & Vita, A. (2023) · Brain Sciences · doi:10.3390/brainsci13050822 · Cited by 5 · see citing works
Arévalo, L. C., Kaae, S. S., Jacobsen, R., Nielsen, A., Slyngborg, L., Smistrup, N., Kastrup, L. M., Hämeen‐Anttila, K., Strömberg, A., & Nørgaard, L. S. (2023) · Research in Social and Administrative Pharmacy · doi:10.1016/j.sapharm.2023.12.006 · Cited by 5 · see citing works
Boutin, D., Mastine, S. C., Beaubien, L., Berthiaume, M., Boilard, D., Borja, J., Botton, É., Boulianne-Gref, J., Breton, S., Castellano, C., et al. (2021) · Research Involvement and Engagement · doi:10.1186/s40900-021-00258-1 · Cited by 5 · see citing works
Michaels, D. L., Peña, Y., Kunz, B. L., & Getz, K. A. (2021) · Therapeutic Innovation & Regulatory Science · doi:10.1007/s43441-021-00289-6 · Cited by 5 · see citing works
Rasiah, J., Freedman, S. B., Macdonald, L., Prisnie, K., Eltorki, M., Finkelstein, Y., Hopkin, G., Santana, M., Thull‐Freedman, J. D., Stang, A. S., et al. (2022) · BMJ Open · doi:10.1136/bmjopen-2021-059689 · Cited by 5 · see citing works
Savarese, M., Usta, D., Bozzoli, F., Fanning, V., Molinari, F., Graffigna, G., & Zaratin, P. (2025) · Research Involvement and Engagement · doi:10.1186/s40900-025-00687-2 · Cited by 4 · see citing works
Gunn, C. J., Fruytier, S. E., Finlay, T. M. D., Vat, L. E., Zuiderent‐Jerak, T., & Schuitmaker‐Warnaar, T. J. (2023) · Science and Public Policy · doi:10.1093/scipol/scad040 · Cited by 4 · see citing works
Self-citationJanssens, A. I. W. A., Drachmann, D., Barnes-Cullen, K., Carrigg, A., Christesen, H. T., Futers, B., Lavery, Y. O., Palms, T., Petersen, J. S., Shah, P., et al. (2024) · Research Involvement and Engagement · doi:10.1186/s40900-024-00609-8 · Cited by 6 · see citing works
Exploring the outcomes of research engagement using the observation method in an online setting
Marshall, D. A., Suryaprakash, N., Lavallee, D. C., Barker, K. L., MacKean, G., Zelinsky, S., McCarron, T. L., Santana, M., Moayyedi, P., & Bryan, S. (2023) · BMJ Open · doi:10.1136/bmjopen-2023-073953 · Cited by 4 · see citing works
Roquette, C., Crisóstomo, S., Milagre, T. H., Ribeiro, R. S., Pedro, A. R., & Valente, A. (2024) · BMJ Open · doi:10.1136/bmjopen-2023-077444 · Cited by 4 · see citing works
Blockchain for building trust in genomic initiatives
Zahid, A., Sharma, R., & Ahmed, R. (2024) · World Medical & Health Policy · doi:10.1002/wmh3.641 · Cited by 4 · see citing works
Engaging children and adolescents in the design and conduct of paediatric research
Bierer, B. E., Koppelman, E. A., Croker, A. K., Hosseinzadeh, S., Hovinga, C. A., Joffe, S., McMillan, G., Nelson, R., & Bucci-Rechtweg, C. M. (2024) · Frontiers in Pediatrics · doi:10.3389/fped.2024.1481754 · Cited by 4 · see citing works
Bridging the gap: empowering patients as research partners through a structured training program
Redding, A., Copeland, L., Murphy, D. M., Clemmons-Lloyd, K., Cummings, K., Doyle, J., Kesavan, S., Mitchell, V., Riley, D., Stechison, L., et al. (2025) · Research Involvement and Engagement · doi:10.1186/s40900-025-00685-4 · Cited by 4 · see citing works
Heijerman-Holtgrefe, A., Beljaars, L., Verdellen, C. W. J., van de Griendt, J., Cath, D. C., Hoekstra, P. J., Huyser, C., & Utens, E. M. W. J. (2021) · Current research in psychiatry · doi:10.46439/psychiatry.1.014 · Cited by 4 · see citing works
van Rensen, A. J. M. L., Voogdt-Pruis, H. R., & Vroonland, E. (2020) · Frontiers in Medicine · doi:10.3389/fmed.2020.00558 · Cited by 4 · see citing works
Patient partnership is essential to the advancement of pain research
Birnie, K. A., & Neville, A. (2025) · Journal of Pain · doi:10.1016/j.jpain.2025.105438 · Cited by 3 · see citing works
Reeve, E., Cowan, K., Ellett, L. M. K., Sinclair, R. G., Pietsch, A., Pietsch, T., de la Perrelle, L., Deimel, J., To, J., Daly, S., et al. (2025) · Journal of Alzheimer s Disease · doi:10.1177/13872877251359984 · Cited by 3 · see citing works
Irish, B. N., Chambers, C. T., Dol, J., Parker, J. A., Huber, A. M., Brandelli, Y. N., Nichols, D., & Brause, J. (2025) · Arthritis Research & Therapy · doi:10.1186/s13075-025-03651-3 · Cited by 3 · see citing works
Coyne, P., Copeland, L., Murphy, D. M., Redding, A., Johnson, C. C., Kippen, K. E., & Santarossa, S. (2025) · Learning Health Systems · doi:10.1002/lrh2.70047 · Cited by 3 · see citing works
Sides, T. L., Wisdom, J. P., Argust, M. M., Amundson, E. C., Burgess, D. J., Meis, L. A., Jensen, A., & Krebs, E. E. (2025) · Journal of General Internal Medicine · doi:10.1007/s11606-025-09918-4 · Cited by 3 · see citing works
Benchmarking Patient Engagement Capabilities and Preparedness of Drug Development Sponsors
Kim, J. Y., Acelas, M. P. B., Granville, C. A., & Getz, K. A. (2023) · Therapeutic Innovation & Regulatory Science · doi:10.1007/s43441-023-00545-x · Cited by 3 · see citing works
Standardising Patient Engagement in Drug Development
Egher, C., & Zvonareva, O. (2024) · Science & Technology Studies · doi:10.23987/sts.121487 · Cited by 3 · see citing works
Clinical trial designs and endpoints
Zeissler, M., & Chapman, R. (2024) · Handbook of clinical neurology · doi:10.1016/b978-0-323-90120-8.00013-7 · Cited by 3 · see citing works
van Eeghen, C., Hitt, J. R., Pomeroy, D., Reynolds, P., Rose, G. L., & Lavoie, J. O. (2022) · Journal of General Internal Medicine · doi:10.1007/s11606-021-07308-0 · Cited by 3 · see citing works
Ruskin, D. A., Szczech, K., Tyrrell, J., & Isaac, L. (2024) · Healthcare · doi:10.3390/healthcare12030360 · Cited by 3 · see citing works
The Paradox of Help: User Participation in Rural Municipal Health and Care Services
Tyskø, E. H. D., Lorås, L., & Priest, J. B. (2024) · Nordisk välfärdsforskning | Nordic Welfare Research · doi:10.18261/nwr.9.4.8 · Cited by 2 · see citing works
Rogers, E. T., Bognanno, T. G., Perkins, T., Gianares, B. W., Schuler, K. W., Geißler, J., Larsen, V., Lobban, D., Dormer, L., Daly, J. S., et al. (2025) · Future Oncology · doi:10.1080/14796694.2025.2514415 · Cited by 2 · see citing works
Jessa, J. S., Zhang, M., Bonhomme, J., Richards, D. P., Lorenzetti, D., Chambers, C. T., & Birnie, K. A. (2025) · Health Expectations · doi:10.1111/hex.70349 · Cited by 2 · see citing works
Foster, M., Fergusson, D. A., Thompson, E., Hunniford, V. T., Scott, T., Daniels, S. R., Richards, D. P., Messner, P., Hendrick, K., Sullivan, P., et al. (2025) · Research Involvement and Engagement · doi:10.1186/s40900-025-00818-9 · Cited by 2 · see citing works
Mixed identity is an identity: embracing the people involved in research partnerships
Wang, E., Lowthian, T., & Truong, L. K. (2025) · BMJ Open · doi:10.1136/bmjopen-2025-101205 · Cited by 2 · see citing works
Singh, K., Messmer, M. F., D'Souza, R. D., Russo, M. L., Jackson, J. L., Jaimes, K. B., Cortes, J., Buber, Y., Earing, M. G., Abusbeitan, A., et al. (2026) · Pregnancy · doi:10.1002/pmf2.70215 · Cited by 2 · see citing works
Methods of Engaging Interest‐Holders in Healthcare Evidence Syntheses: A Scoping Review
Todhunter‐Brown, A., Petkovic, J., Chang, C., Griebler, U., Hannigan, A., Hilgart, J., Hussain, B., Jull, J., Kien, C., Ledinger, D., et al. (2026) · Cochrane Evidence Synthesis and Methods · doi:10.1002/cesm.70066 · Cited by 3 · see citing works
Patient and community engagement in clinical platform trials
Jarke, H., Röhl, C., Krause, A., Boudes, M., & Greenhalgh, F. (2023) · Open Research Europe · doi:10.12688/openreseurope.15869.1 · Cited by 2 · see citing works
Self-citationHartling, L., Elliott, S. A., Mabbott, A. P., Leung, J., Shearer, K., Smith, C., & Scott, S. D. (2024) · Research Involvement and Engagement · doi:10.1186/s40900-024-00547-5 · Cited by 2 · see citing works
- Authors
- Vat, L. E., Finlay, T., Jan Schuitmaker‐Warnaar, T., Fahy, N., Robinson, P., Boudes, M., Diaz, A., Ferrer, E., Hivert, V., Purman, G., Kürzinger, M., Kroes, R. A., Hey, C., & Broerse, J. E. W.
- Affiliations
- Vrije Universiteit Amsterdam (NL)
- University of Oxford (GB)
- Athena Institute Vrije Universiteit Amsterdam Amsterdam The Netherlands
- MSD (UK) Limited (United Kingdom) (GB)
- European Patients Forum (LU)
- Alzheimer Europe (LU)
- European Organisation for Rare Diseases (FR)
- Nexgen Healthcare Communications London UK
- Sanofi (France) (FR)
- Eli Lilly (Netherlands) (NL)
- Merck Healthcare KGaA, Darmstadt (Germany) (DE)
- Corresponding author
- Vat, Lidewij Eva
- ORCID
- Venue
- Health Expectations
- Publisher
- Wiley
- Published
- 2019-09-06
- Volume
- 23
- Issue
- 1
- Pages
- 5-18
- ISSN
- 1369-6513 (ISSN-L)
- 1369-7625
- PMC
- PMC6978865
- OpenAlex
- W2960953958
- Cited by
- 173
- References
- 73
- Citations by year
- 2026: 19 · 2025: 26 · 2024: 48 · 2023: 29 · 2022: 23 · 2021: 23 · 2020: 5
- FWCI
- 2.34
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Health Expectations (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- VU Research Portal (publishedVersion, other-oa)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Radar (Oxford Brookes University) (submittedVersion, cc-by)
- Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
- Funders
- Innovative Medicines Initiative (777450)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- patient engagement, evaluation metrics, research prioritization, clinical trial design, regulatory dialogue, health technology assessment, stakeholder engagement
- MeSH terms
- Decision Making, Family, Humans, Patient Participation, Research
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