ArticleRMD open2022
Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study.
Article in RMD open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
2 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.
- Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners.Annals of the rheumatic diseases · 2024Pooled it
- EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.Annals of the rheumatic diseases · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 4 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThe contribution of patient research partners (PRPs) is well established in EULAR recommendation development. However, in observational and registry studies, PRP involvement is not well-defined and remains limited.
methodsBased on a round table discussion during the EULAR Registries and Observational Drug Studies (RODS) meeting in 2019, a mixed methods study was undertaken, including a survey to RODS participants and EULAR PRPs and focus groups with volunteers from the survey. An inductive thematic analysis approach was applied to qualitative data and descriptive statistics to survey data.
resultsWe retrieved 45 survey responses and ran 3 focus groups with a total of 17 participants. The notion of PRP involvement in research was positively perceived by PRPs and the wider academic rheumatology community. There is universal agreement that PRP involvement in registry research is low and inclusion in different parts of the research cycle is limited. Potential benefits of PRP involvement include: input on the research objectives based on patients' needs, advice and support regarding recruitment and retention strategies, obtaining patient views on analysis and interpretation, and assistance in disseminating results. Researchers and PRPs highlighted that education, inclusion of PRPs with diverse backgrounds and a welcoming environment as important facilitators for PRP involvement. On the other hand, preconceptions of researchers and insufficient budget allocation have been identified as barriers.
conclusionThere is an unmet need to involve PRPs in registries and observational studies and to better define their required input during all research stages. This study provides suggestions for successful PRP integration.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.