Patients as Collaborative Partners in Clinical Research to Inform HTA

Wit, Maarten de; Gossec, Laure

doi:10.1007/978-981-10-4068-9_8

Cited by 1 publication

(5 citation statements)

References 25 publications

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“…8 Qualitative data were analysed according to the principles of thematic content analysis (more details in online supplemental table 6). 33 The results were discussed within the EULAR taskforce, 1 and any disagreements on the interpretation of the findings were resolved by a consensus of the core group (MdW, LG, PS, KA).…”

Section: Discussionmentioning

confidence: 99%

“…To this end, the findings have supported the process of updating the EULAR recommendations for PRP involvement and made them more evidence based. 1 Another strength is the obtention of a more nuanced understanding of the challenges and complexities surrounding PRP involvement in rheumatology research. Furthermore, our study stands out for its comprehensive approach, analysing a broad spectrum of study types, including quantitative and qualitative studies, reviews, opinion pieces and information from websites.…”

Section: Discussionmentioning

confidence: 99%

“…The scope of the literature search was defined by the EULAR taskforce steering group, 1 and addressed 11 specific research questions (Box 1).…”

Section: Literature Searchmentioning

confidence: 99%

“…This SLR study is the result of a co-production of three PRPs (MdW, CZ, HB) and five researchers, all being members of the EULAR steering committee responsible for updating the EULAR recommendations on PRP involvement. 1 The three PRPs actively contributed to all meetings and discussions within the steering committee. They were involved at the early stage of formulating the research questions until reviewing and agreeing on the final manuscript.…”

Section: Patient and Public Involvementmentioning

confidence: 99%

“…Patient research partners (PRPs) are described as individuals living with a health condition who 'provide input to research, through active collaboration as equal partners with researchers'. 1…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

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: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“…The scope of the literature search was defined by the EULAR taskforce steering group, 1 and addressed 11 specific research questions (Box 1).…”

Section: Literature Searchmentioning

confidence: 99%

Section: Patient and Public Involvementmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%