ArticleAnnals of the rheumatic diseases2023
Matching researchers' needs and patients' contributions: practical tips for meaningful patient engagement from the field of rheumatology.
Article in Annals of the rheumatic diseases, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- 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
- A roadmap for developing a program to self-manage post-traumatic knee osteoarthritis risk.Osteoarthritis and cartilage open · 2026Article
- Translational human gut microbiome research: What are the missing pieces of the puzzle?Journal of translational medicine · 2026Review
- What are the characteristics and impacts of a patient-led conference? A qualitative study.BMJ open · 2026Article
- Patient and public involvement in pulmonary embolism research: insights from the development of a pulmonary embolism follow-up care model.Research involvement and engagement · 2026Article
- Patient- and Public-Led Research - How Is It Defined and Practiced: A Scoping Review.Journal of patient experience · 2026Article
- The advocacy effect: a grounded theory study on the inclusion of caregivers or nearest support persons in research to better understand patient outcomes in rheumatoid arthritis.Rheumatology international · 2025Article
- The ultimate power play in research - partnering with patients, partnering with power.Research involvement and engagement · 2025Article
- The broad range of self-management strategies that people with rheumatic and musculoskeletal conditions apply: an online survey using a citizen science approach.Rheumatology international · 2025Article
- Patient and public involvement in neonatal research - experiences and insights from parents and researchers.Research involvement and engagement · 2025Article
- Training and peer-group coaching for pairs of researchers and patient representatives to support continuous two-way learning.Research involvement and engagement · 2024Article
- EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.Annals of the rheumatic diseases · 2024Article
- Article
- The psychometric properties of the Pearlin Mastery Scale in persons living with restless legs syndrome.PloS one · 2024Article
- Development of the Preferred Components for Co-Design in Research Guideline and Checklist: Protocol for a Scoping Review and a Modified Delphi Process.JMIR research protocols · 2023Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
There is an increasing recognition of the importance of patient engagement and involvement in health research, specifically within the field of rheumatology. In general, researchers in this specialty appreciate the value of patients as partners in research. In practice, however, the majority of researchers does not involve patients on their research teams. Many researchers find it difficult to match their needs for patient engagement and the potential contributions from individuals living with rheumatic disease. In this Viewpoint, we provide researchers and patients practical tips for matching 'supply and demand,' based on our own experiences as patient engagement consultants and trainers in rheumatology research. All authors started as a 'naïve' patient or caregiver, an identity that evolved through a process of 'adversarial growth': positive changes that are experienced as a result of the struggle with highly challenging life circumstances. Here, we introduce four stages of adversarial growth in the context of research. We submit that all types of patients have their own experiences, qualities and skills, and can add specific input to research. The recommendations for engagement are not strict directives. They are meant as starting points for discussion or interview. Regardless of individual qualities and knowledge, we believe that all patients engaged in research have a single goal in common: to contribute to research that ultimately will change the lives of many other patients.
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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.