Designing a tool to support patient and public involvement in research projects: the Involvement Matrix

Dirk-Wouter Smits, Karen van Meeteren, Martijn Klem, Mattijs Alsem, Marjolijn Ketelaar, Dirk-Wouter Smits, Karen van Meeteren, Martijn Klem, Mattijs Alsem, Marjolijn Ketelaar

Abstract

Background: Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects.

Methods: The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels.

Results: A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a 'matrix'. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user's guide.

Conclusion: The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research.

Keywords: Expectations; Patient involvement; Projects; Research; Roles.

Conflict of interest statement

Competing interestsThe authors declare that they have no competing interests.

© The Author(s) 2020.

Figures

Fig. 1
Fig. 1
Involvement Matrix; www.kcrutrecht.nl/involvement-matrix. © Center of Excellence for Rehabilitation Medicine Utrecht, used with permission

References

    1. Richards T, et al. Let the patient revolution begin. BMJ. 2013;346:f2614. doi: 10.1136/bmj.f2614.
    1. Harrison JD, et al. Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities. Health Expect. 2019;22(3):307–316. doi: 10.1111/hex.12873.
    1. .
    1. Morris C, et al. Why it is crucial to involve families in all stages of childhood disability research. Dev Med Child Neurol. 2011;53(8):769–771. doi: 10.1111/j.1469-8749.2011.03984.x.
    1. van der Scheer L, et al. The benefits of patient involvement for translational research. Health Care Anal. 2017;25(3):225–241. doi: 10.1007/s10728-014-0289-0.
    1. Chu LF, et al. “Nothing about us without us”-patient partnership in medical conferences. BMJ. 2016;354:i3883. doi: 10.1136/bmj.i3883.
    1. United Nations Convention on the rights of persons with disabilities. Eur J Health Law. 2007;14(3):281–298.
    1. Bailey SS, et al. Involving disabled children and young people as partners in research: a systematic review. Child Care Health Dev. 2015;41(4):505–514. doi: 10.1111/cch.12197.
    1. Shen S, et al. How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expect. 2017;20(4):543–554. doi: 10.1111/hex.12490.
    1. Crocker JC, Ricci-Cabello I, Parker A, Hirst JA, Chant A, Petit-Zeman S, Evans D, Rees S. Impact of patient and public involvement on enrolment and retention in clinical trials: a systematic review and meta-analysis. Br Med J. 2018;363:k4738. doi: 10.1136/bmj.k4738.
    1. Domecq JP, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89. doi: 10.1186/1472-6963-14-89.
    1. Camden C, et al. Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts. Disabil Rehabil. 2015;37(15):1390–1400. doi: 10.3109/09638288.2014.963705.
    1. de Wit M, et al. Preparing researchers for patient and public involvement in scientific research: development of a hands-on learning approach through action research. Health Expect. 2018;21(4):752–763. doi: 10.1111/hex.12671.
    1. Phoenix M, et al. Using qualitative research perspectives to inform patient engagement in research. Res Involv Engagem. 2018;4(1):20. doi: 10.1186/s40900-018-0107-1.
    1. Hickey G, Richards T, Sheehy J. Co-production from proposal to paper. Nature. 2018;562(7725):29–31. doi: 10.1038/d41586-018-06861-9.
    1. Romsland GI, Milosavljevic KL, Andreassen TA. Facilitating non-tokenistic user involvement in research. Res Involv Engagem. 2019;5(1):18. doi: 10.1186/s40900-019-0153-3.
    1. Schilling I, et al. Patient involvement in clinical trials: motivation and expectations differ between patients and researchers involved in a trial on urinary tract infections. Res Involv Engagem. 2019;59(1):15. doi: 10.1186/s40900-019-0145-3.
    1. Alsem MW, et al. Co-creation of a digital tool for the empowerment of parents of children with physical disabilities. Res Involv Engagem. 2017;11(3):26. doi: 10.1186/s40900-017-0079-6.
    1. Wintels SC, et al. How do adolescents with cerebral palsy participate? Learning from their personal experiences. Health Expect. 2018;21(6):1024–1034. doi: 10.1111/hex.12796.
    1. Dudley L, Gamble C, Allam A, Bell P, Buck D, Goodare H, Hanley B, Preston J, Walker A, Williamson P, Young B. A little more conversation please? Qualitative study of researchers’ and patients’ interview accounts of training for patient and public involvement in clinical trials. Trials. 2015;16(1):190. doi: 10.1186/s13063-015-0667-4.
    1. Bell T, Vat LE, McGavin C, Keller M, Getchell L, Rychtera A, Fernandez N. Co-building a patient-oriented research curriculum in Canada. Res Involv Engagem. 2019;5(1):7. doi: 10.1186/s40900-019-0141-7.
    1. Staley K, Cockcroft E, Shelly A, Liabo K. ‘What can I do that will most help researchers?’ A different approach to training the public at the start of their involvement in research. Res Involv Engagem. 2019;5(1):10. doi: 10.1186/s40900-019-0144-4.
    1. De Brún T, et al. Using participatory learning & action (PLA) research techniques for inter-stakeholder dialogue in primary healthcare: an analysis of stakeholders’ experiences. Res Involv Engagem. 2017;6(3):28. doi: 10.1186/s40900-017-0077-8.
    1. Leask CF, et al. Framework, principles and recommendations for utilising participatory methodologies in the co-creation and evaluation of public health interventions. Res Involv Engagem. 2019;5(1):2. doi: 10.1186/s40900-018-0136-9.
    1. Smits DW, Klem M, Alsem MW, Van Meeteren KM, Ketelaar M. Patient and parent participation in research. Instructional course at the meeting of the European academy of childhood disability, Tblisi, Georgia. 2018.
    1. Moser A, Korstjens I. Series: practical guidance to qualitative research. Part 3: sampling, data collection and analysis. Eur J Gen Pract. 2018;24(1):9–18. doi: 10.1080/13814788.2017.1375091.
    1. World Medical Association World medical association declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310(20):2191–2194. doi: 10.1001/jama.2013.281053.
    1. Arnstein SR. A ladder of citizin participation. J Am Inst Plann. 1969;35(4):216–224. doi: 10.1080/01944366908977225.
    1. Stewart R, Liabo K. Involvement in research without compromising research quality. J Health Serv Res Policy. 2012;17(4):248–251. doi: 10.1258/jhsrp.2012.011086.
    1. de Wit MPT, Kvien TK, Gossec L. Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology. RMD Open. 2015;1(1):e000129. doi: 10.1136/rmdopen-2015-000129.
    1. Lemmens LC, et al. Patient involvement in diabetes care: experiences in nine diabetes care groups. Int J Integr Care. 2015;15:e044. doi: 10.5334/ijic.2207.
    1. Wong G, et al. RAMESES publication standards: meta-narrative reviews. BMC Med. 2013;11:21. doi: 10.1186/1741-7015-11-21.
    1. Hart RA. Children’s participation: from tokenism to citizenship. Florence: International Child Development Centre: UNICEF; 1992.
    1. Smit C, van der Valk T, Wever . Fundamenteeel onderzoek en patientenorganisaties. Badhoevedorp: De Adelaar; 2011.
    1. Tritter JQ, McCallum A. The snakes and ladders of user involvement: moving beyond Arnstein. J Health Policy. 2006;76:156–168. doi: 10.1016/j.healthpol.2005.05.008.
    1. Liabo K, et al. Clarifying the roles of patients in research. BMJ. 2018;361:k1463. doi: 10.1136/bmj.k1463.
    1. .
    1. .
    1. Beckers LWME, et al. Barriers to recruitment of children with cerebral palsy in a trial of home-based training. Contemp Clin Trials Commun. 2019;15:100371. doi: 10.1016/j.conctc.2019.100371.
    1. Locock L, Boylan AM, Snow R, Staniszewska S. The power of symbolic capital in patient and public involvement in health research. Health Expect. 2017;20(5):836–844. doi: 10.1111/hex.12519.
    1. Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6(1):42. doi: 10.1186/1748-5908-6-42.
    1. Fergusson D, et al. The prevalence of patient engagement in published trials: a systematic review. Res Involv Engagem. 2018;4(1):17. doi: 10.1186/s40900-018-0099-x.
    1. Staniszewska S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem. 2017;3(1):13. doi: 10.1186/s40900-017-0062-2.
    1. Staniszewska S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;358:j3453. doi: 10.1136/bmj.j3453.

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