{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T18:21:49Z","timestamp":1788373309519,"version":"build-2803163510"},"reference-count":20,"publisher":"BMJ","issue":"4","license":[{"start":{"date-parts":[[2023,11,23]],"date-time":"2023-11-23T00:00:00Z","timestamp":1700697600000},"content-version":"unspecified","delay-in-days":22,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["RMD Open"],"accepted":{"date-parts":[[2023,9,6]]},"published-print":{"date-parts":[[2023,11]]},"abstract":"<jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>The inclusion of patient research partners (PRPs) in research projects is increasingly recognised and recommended in rheumatology. The level of involvement of PRPs in translational research in rheumatology remains unknown, while in randomised clinical trials (RCTs), it has been reported to be 2% in 2020. Therefore, we aimed to assess the involvement of PRPs in recent translational studies and RCTs in rheumatology.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>We conducted a scoping literature review of the 80 most recent articles (40 translational studies and 40 RCTs) from four target diseases: rheumatoid arthritis, psoriatic arthritis, systemic lupus erythematosus and lower extremity osteoarthritis. We selected 20 papers from each disease, published up until 1 March 2023, in rheumatology and general scientific journals. In each paper, the extent of PRP involvement was assessed. Analyses were descriptive.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Of 40 translational studies, none reported PRP involvement. Of 40 RCTs, eight studies (20%) reported PRP involvement. These trials were mainly from Europe (75%) and North America (25%). Most of them (75%) were non-industry funded. The type of PRP involvement was reported in six of eight studies: six studies reported PRP participation in the study design or design of the intervention and two of them in the interpretation of the results. All the trials reporting the number of PRPs (75%), involved at least two PRPs.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>Despite a worldwide movement advocating for increased patient involvement in research, PRPs in translational research and RCTs in rheumatology are significantly under-represented. This limited involvement of PRPs in research highlights a persistent gap between the existing recommendations and actual practice.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1136\/rmdopen-2023-003566","type":"journal-article","created":{"date-parts":[[2023,11,23]],"date-time":"2023-11-23T12:41:09Z","timestamp":1700743269000},"page":"e003566","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":11,"title":["Involving patients as research partners in research in rheumatology: a literature review in 2023"],"prefix":"10.1136","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8627-5758","authenticated-orcid":false,"given":"Muriel","family":"Elhai","sequence":"first","affiliation":[{"name":"Department of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9119-5330","authenticated-orcid":false,"given":"Diego","family":"Benavent","sequence":"additional","affiliation":[{"name":"Rheumatology, Hospital Universitario La Paz, Madrid, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8708-9324","authenticated-orcid":false,"given":"Krystel","family":"Aouad","sequence":"additional","affiliation":[{"name":"Department of Rheumatology, Saint George Hospital University Medical Center, Saint George University of Beirut, Beirut, Lebanon"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8895-6941","authenticated-orcid":false,"given":"Paul","family":"Studenic","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Department of Medicine (Solna), Karolinska Institute, Stockholm, Sweden"},{"name":"Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Vienna, Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heidi","family":"Bertheussen","sequence":"additional","affiliation":[{"name":"EULAR PRP Network, EULAR patient research partner, Oslo, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jette","family":"Primdahl","sequence":"additional","affiliation":[{"name":"Department of Regional Health Research, University of Southern Denmark, Odense, Denmark"},{"name":"Danish Hospital for Rheumatic Diseases, University hospital of Southern Denmark, S\u00f8nderborg, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Codruta","family":"Zabalan","sequence":"additional","affiliation":[{"name":"EULAR Patient Research Partner - Romanian League Against Rheumatism, Bucharest, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8428-6354","authenticated-orcid":false,"given":"Maarten","family":"de Wit","sequence":"additional","affiliation":[{"name":"EULAR PRP network, EULAR patient research partner, Amsterdam, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4528-310X","authenticated-orcid":false,"given":"Laure","family":"Gossec","sequence":"additional","affiliation":[{"name":"INSERM, Institut Pierre Louis d'Epid\u00e9miologie et de Sant\u00e9 Publique, Sorbonne Universite, Paris, France"},{"name":"APHP, Rheumatology Department, Hopital Universitaire Pitie Salpetriere, Paris, France"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2023,11,23]]},"reference":[{"key":"2025090313233768000_9.4.e003566.1","unstructured":"Administration Usfad. learn about FDA patient engagement. 2021. 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Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors","volume":"12","author":"Lang","year":"2022","journal-title":"BMJ Open"}],"container-title":["RMD Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/rmdopen-2023-003566","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,9,3]],"date-time":"2025-09-03T20:23:46Z","timestamp":1756931026000},"score":1,"resource":{"primary":{"URL":"https:\/\/rmdopen.bmj.com\/lookup\/doi\/10.1136\/rmdopen-2023-003566"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,11]]},"references-count":20,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2023,11,23]]},"published-print":{"date-parts":[[2023,11]]}},"alternative-id":["10.1136\/rmdopen-2023-003566"],"URL":"https:\/\/doi.org\/10.1136\/rmdopen-2023-003566","relation":{},"ISSN":["2056-5933"],"issn-type":[{"value":"2056-5933","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,11]]}}}