Background Patient involvement in medical research has been increasingly promoted by health organisations . However, implementation of this involvement may require specific measures to enhance its efficacy and avoid overburdening patient research partners (PRPs), as advocated in the 2011 EULAR recommendations for the involvement of PRPs in EULAR projects , mainly driven by expert opinion due to lack of data at that time.
Objectives Review currently available literature and guidelines, relating to PRP engagement in the research process.
Methods A systematic search was performed up to Sept 2013 (Pubmed, Embase, Cochrane and InvoNET). Inclusion criteria: publications of consensus and/or guidelines relating to patient participation/engagement in research, in English. MeSH terms: (Patient research partners/stakeholders/consumer) and (patient participation/community based participatory research/consumer involvement) and (guidelines/recommendations). Explicit recommendations/guidelines for PRP participation in research were focused;lower levels of evidence were also analysed, including descriptive reports of patient involvement in research, and opinion papers. Data: extracted and divided into broad aspects considered important for PRP involvement in research, based on the EULAR recommendations framework and on the authors' opinion .
Results We found and screened 550 articles, of these 18 were analysed (2 were unpublished/“gray” literature found on websites). Many papers (n=9, 50%) came from UK; the others from US (N=5), or Europe (N=4). Medical specialties covered, related to chronic diseases, included oncology (N=5), diabetes (N=2), nephrology (N=2) and rheumatology (N=2), while 6 articles were generic in nature. Four articles were actual recommendations (Delphi consensus n=2, literature review, n=2). The other articles were mainly descriptive experiences. The most frequent aspects covered were; extent of patient involvement (78% of articles) and PRP education/training (67% of articles) – Table.
Conclusions Although PRP involvement is considered important, there are limited explicit recommendations in the literature, of which the EULAR guidelines may be the most practical. The broad concepts covered in the 18 publications were similar indicating some level of consensus. This literature review will form the basis of new formalized guidelines for PRP participation in research useful for both rheumatology and the greater medical community.
Boote et al. Health Policy 2006;75:280.
de Wit et al. Ann Rheum Dis 2011;70:722.
Acknowledgements Clifton Bingham, Amye Leong, Lyn March, Pam Monte, Marieke Scholte
Disclosure of Interest None declared