Evidence map›Paper›PMID 37996123›Full record

ReviewRMD open2023

Involving patients as research partners in research in rheumatology: a literature review in 2023.

Muriel Elhai, Diego Benavent, Krystel Aouad, Paul Studenic, Heidi Bertheussen, Jette Primdahl, Codruta Zabalan, Maarten de Wit, Laure Gossec

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in RMD open, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed.

  1. Article
  2. Article
  3. Citizen science in osteoarthritis research: a scoping review.Journal of orthopaedic surgery and research · 2025
    Article
  4. Review
  5. Article
  6. Article
  7. Article
  8. Review
  9. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Muriel ElhaiDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland.ORCID 0000-0001-8627-5758
Diego BenaventRheumatology, Hospital Universitario La Paz, Madrid, Spain.ORCID 0000-0001-9119-5330
Krystel AouadDepartment of Rheumatology, Saint George Hospital University Medical Center, Saint George University of Beirut, Beirut, Lebanon.ORCID 0000-0001-8708-9324
Paul StudenicDivision of Rheumatology, Department of Medicine (Solna), Karolinska Institute, Stockholm, Sweden.ORCID 0000-0002-8895-6941
Heidi BertheussenEULAR PRP Network, EULAR patient research partner, Oslo, Norway.
Jette PrimdahlDepartment of Regional Health Research, University of Southern Denmark, Odense, Denmark.
Codruta ZabalanEULAR Patient Research Partner - Romanian League Against Rheumatism, Bucharest, Romania.
Maarten de WitEULAR PRP network, EULAR patient research partner, Amsterdam, the Netherlands.ORCID 0000-0002-8428-6354
Laure GossecINSERM, Institut Pierre Louis d'Epidémiologie et de Santé Publique, Sorbonne Universite, Paris, France laure.gossec@aphp.fr.ORCID 0000-0002-4528-310X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveThe 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.

methodsWe 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.

resultsOf 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.

conclusionDespite 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.

Indexed as

Arthritis, PsoriaticArthritis, RheumatoidLupus Erythematosus, SystemicRheumatologyHumansPatient ParticipationEpidemiologyOutcome and Process Assessment, Health CareQuality Indicators, Health Care

Identifiers

PMID37996123
PMCPMC10668287

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.