Involving patients as research partners in research in rheumatology: a literature review in 2023
Objective 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...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2023-10-01
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| Series: | RMD Open |
| Online Access: | https://rmdopen.bmj.com/content/9/4/e003566.full |
| _version_ | 1797366722238349312 |
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| author | Laure Gossec Maarten de Wit Jette Primdahl Paul Studenic Muriel Elhai Heidi Bertheussen Diego Benavent Codruța Zăbălan Krystel Aouad |
| author_facet | Laure Gossec Maarten de Wit Jette Primdahl Paul Studenic Muriel Elhai Heidi Bertheussen Diego Benavent Codruța Zăbălan Krystel Aouad |
| author_sort | Laure Gossec |
| collection | DOAJ |
| description | Objective 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.Methods 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.Results 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.Conclusion 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. |
| first_indexed | 2024-03-08T17:08:15Z |
| format | Article |
| id | doaj.art-50b5f3e81e164f1d91993f79ed56e958 |
| institution | Directory Open Access Journal |
| issn | 2056-5933 |
| language | English |
| last_indexed | 2024-03-08T17:08:15Z |
| publishDate | 2023-10-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | RMD Open |
| spelling | doaj.art-50b5f3e81e164f1d91993f79ed56e9582024-01-04T03:40:10ZengBMJ Publishing GroupRMD Open2056-59332023-10-019410.1136/rmdopen-2023-003566Involving patients as research partners in research in rheumatology: a literature review in 2023Laure Gossec0Maarten de Wit1Jette Primdahl2Paul Studenic3Muriel Elhai4Heidi Bertheussen5Diego Benavent6Codruța Zăbălan7Krystel Aouad8INSERM, Institut Pierre Louis d`Epidémiologie et de Santé Publique, Sorbonne Universite, Paris, FranceEULAR PRP network, EULAR patient research partner, Amsterdam, the NetherlandsDepartment of Regional Health Research, University of Southern Denmark, Odense, DenmarkDivision of Rheumatology, Department of Medicine (Solna), Karolinska Institute, Stockholm, SwedenDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandEULAR PRP Network, EULAR patient research partner, Oslo, NorwayRheumatology, Hospital Universitario La Paz, Madrid, SpainEULAR Patient Research Partner - Romanian League Against Rheumatism, Bucharest, RomaniaDepartment of Rheumatology, Saint George Hospital University Medical Center, Saint George University of Beirut, Beirut, LebanonObjective 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.Methods 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.Results 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.Conclusion 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.https://rmdopen.bmj.com/content/9/4/e003566.full |
| spellingShingle | Laure Gossec Maarten de Wit Jette Primdahl Paul Studenic Muriel Elhai Heidi Bertheussen Diego Benavent Codruța Zăbălan Krystel Aouad Involving patients as research partners in research in rheumatology: a literature review in 2023 RMD Open |
| title | Involving patients as research partners in research in rheumatology: a literature review in 2023 |
| title_full | Involving patients as research partners in research in rheumatology: a literature review in 2023 |
| title_fullStr | Involving patients as research partners in research in rheumatology: a literature review in 2023 |
| title_full_unstemmed | Involving patients as research partners in research in rheumatology: a literature review in 2023 |
| title_short | Involving patients as research partners in research in rheumatology: a literature review in 2023 |
| title_sort | involving patients as research partners in research in rheumatology a literature review in 2023 |
| url | https://rmdopen.bmj.com/content/9/4/e003566.full |
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