Evidence map›Paper›PMID 38724076›Full record

SynthesisAnnals of the rheumatic diseases2024

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners.

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

Abstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in Annals of the rheumatic diseases, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

8 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Review
  5. Article
  6. Article
  7. Article
  8. Article
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.

Krystel AouadRheumatology Division, Saint George University of Beirut, Saint George Hospital University Medical Center, Beirut, Lebanon krystel.aouad@hotmail.com.ORCID http://orcid.org/0000-0001-8708-9324
Maarten de WitEULAR Study Group for collaborative research, Patient Research Partner, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0002-8428-6354
Muriel ElhaiRheumatology Department, University of Zurich, University Hospital Zurich, Zurich, Switzerland.
Diego BenaventRheumatology Department, Hospital Universitari de Bellvitge, Barcelona, Spain.ORCID http://orcid.org/0000-0001-9119-5330
Heidi BertheussenPatient Research Partner, Oslo, Norway.
Condruta ZabalanPatient Research Partner, Bucharest, Romania.
Jette PrimdahlDanish Hospital for Rheumatic Diseases, University Hospital of Southern Denmark, Sønderborg, Denmark.ORCID http://orcid.org/0000-0002-1049-4150
Paul StudenicRheumatology Division, Department of Medicine(Solna), Karolinska Institutet, Stockholm, Sweden.ORCID http://orcid.org/0000-0002-8895-6941
Laure GossecRheumatology Department, University Hospital Pitié Salpêtrière, Paris, France.ORCID http://orcid.org/0000-0002-4528-310X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPatient 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.

methodsThe 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.

resultsOf 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.

conclusionThis 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.

Indexed as

Biomedical ResearchPatient ParticipationRheumatologyHumansRheumatic DiseasesHealth-Related Quality Of LifeHealth services researchOutcome and Process Assessment, Health CareQuality Indicators, Health Care

Identifiers

PMID38724076
PMCPMC11503057

What OpenQuestion holds

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LicenceCC BY-NC
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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.