Involving patients as research partners exemplified by the development and evaluation of a communication-skills training programme (KOKOS-Rheuma)

Schöpf-Lazzarino, Andrea C.; Böhm, Peter; Garske, Ulrike; Schlöffel, M.; Stoye, A.; Lamprecht, J.; Mau, Wilfried; Farin, Erik

doi:10.1007/s00393-020-00839-7

Cited by 4 publications

(1 citation statement)

References 22 publications

(46 reference statements)

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“…One study, which engaged four PRPs, found this number to be beneficial due to the diverse perspectives they brought. 45 Larger-scale international consortia projects recruited a higher number of PRPs, with around six PRPs being identified as an effective group size for facilitating participation and decision-making. 2 On the other hand, when reporting all PRP involvement and activities in a research project, 36% of the articles reported a number of PRP higher than nine (online supplemental figure 1).…”

Section: Miscellaneousmentioning

confidence: 99%

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners

Aouad,

de Wit,

Elhai

et al. 2024

Ann Rheum Dis

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Background Patient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and facilitators to PRP involvement in rheumatology research. Methods The SLR was conducted in PubMed/Medline for articles on PRP involvement in rheumatology research, published between 2017 and 2023; websites were also searched in rheumatology and other specialties. Data were extracted regarding the definition of PRPs, their role and added value, as well as barriers and facilitators to PRP involvement. The quality of the articles was assessed. Quantitative data were analysed descriptively, and principles of thematic content analysis was applied to qualitative data. Results Of 1016 publications, 53 articles were included; the majority of these studies were qualitative studies (26%), opinion articles (21%), meeting reports (17%) and mixed-methods studies (11%). Roles of PRPs ranged from research partners to patient advocates, advisors and patient reviewers. PRPs were reported/advised to be involved early in the project (32% of articles) and in all research phases (30%), from the conception stage to the implementation of research findings. The main barriers were challenges in communication and support for both PRPs and researchers. Facilitators of PRP involvement included more than one PRP per project, training of PRPs and researchers, a supportive environment for PRPs (including adequate communication, acknowledgement and compensation of PRPs) and the presence of a PRP coordinator. Conclusion This SLR identified barriers and facilitators to PRP involvement, and was key to updating the European Alliance of Associations for Rheumatology recommendations for PRP–researcher collaboration based on scientific evidence.

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Section: Miscellaneousmentioning

confidence: 99%

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners

Aouad,

de Wit,

Elhai

et al. 2024

Ann Rheum Dis

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Patient and Public Involvement in Research: Lessons for Inflammatory Bowel Disease

Honap

Buisson

Danese

et al. 2023

Journal of Crohn's and Colitis

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Participatory research, also referred to as patient and public involvement, is an approach that involves collaborating with patients affected by the focus of the research, on the design, development, and delivery of research to improve outcomes. There are two broad justifications for this; firstly, that it enhances the quality and relevance of research, and secondly, that it satisfies the ethical argument of patient inclusion for decisions about them. This synergistic and collaborative effort, which bridges the divide between researchers and participants with the lived condition, is now a mainstream activity and widely accepted as best practice. Although there has been a substantial increase in the literature over the past two decades, little has been published on how participatory research has been used in inflammatory bowel disease research and little guidance as to how researchers should go about this. With an increasing incidence and prevalence worldwide, combined with declining study enrolment in an era of perennial unmet need, there are a multitude of benefits of participatory research to IBD patients and investigators, including research output that is informed and relevant to the real world. A key example of participatory research in IBD is the I-CARE study, a large-scale, pan-European observational study assessing the safety of advanced therapies, which had significant patient involvement throughout the study. In this review, we provide a comprehensive overview of the benefits and challenges of participatory research and discuss opportunities of building strategic alliances between IBD patients, healthcare providers, and academics to strengthen research outcomes.

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EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update

de Wit,

Aouad,

Elhai

et al. 2024

Ann Rheum Dis

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Background Since the publication of the 2011 European Alliance of Associations for Rheumatology (EULAR) recommendations for patient research partner (PRP) involvement in rheumatology research, the role of PRPs has evolved considerably. Therefore, an update of the 2011 recommendations was deemed necessary. Methods In accordance with the EULAR Standardised Operational Procedures, a task force comprising 13 researchers, 2 health professionals and 10 PRPs was convened. The process included an online task force meeting, a systematic literature review and an in-person second task force meeting to formulate overarching principles (OAPs) and recommendations. The level of agreement of task force members was assessed anonymously (0–10 scale). Results The task force developed five new OAPs, updated seven existing recommendations and formulated three new recommendations. The OAPs address the definition of a PRP, the contribution of PRPs, the role of informal caregivers, the added value of PRPs and the importance of trust and communication in collaborative research efforts. The recommendations address the research type and phases of PRP involvement, the recommended number of PRPs per project, the support necessary for PRPs, training of PRPs and acknowledgement of PRP contributions. New recommendations concern the benefits of support and guidance for researchers, the need for regular evaluation of the patient–researcher collaboration and the role of a designated coordinator to facilitate collaboration. Agreements within the task force were high and ranged between 9.16 and 9.96. Conclusion The updated EULAR recommendations for PRP involvement are more substantially based on evidence. Together with added OAPs, they should serve as a guide for researchers and PRPs and will ultimately strengthen the involvement of PRPs in rheumatology research.

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Involving patients as research partners exemplified by the development and evaluation of a communication-skills training programme (KOKOS-Rheuma)

Cited by 4 publications

References 22 publications

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners

Patient and Public Involvement in Research: Lessons for Inflammatory Bowel Disease

EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update

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