ArticleThe patient2017
Successful Stepwise Development of Patient Research Partnership: 14 Years' Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT).
Article in The patient, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 papers, 3 of them syntheses 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
39 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Measuring and evaluating participant understanding of consent processes in clinical trials: a systematic review.Trials · 2026Pooled 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
- Defining outcome measures in juvenile idiopathic arthritis associated uveitis by a systematic review analysis: do we need a consensus?Pediatric rheumatology online journal · 2019Pooled it
- Defining success together: a collaborative approach for client and provider-engaged outcomes indicator development in Ontario.Research involvement and engagement · 2026Article
- Promoting informed health choices: the long and winding road.Journal of the Royal Society of Medicine · 2025Article
- Partnering for impact: best practices for planning in-person academic events with Patient Partners involvement- Lessons learned from Diabetes Action Canada.Research involvement and engagement · 2025Article
- The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.Annals of the rheumatic diseases · 2024Article
- Key ingredients for successful collaboration in health research: perspectives of patient research partners.Research involvement and engagement · 2024Article
- Determining the benefits and drawbacks of parents using personal connections and social networks for recruitment in research projects: a qualitative study.Research involvement and engagement · 2023Article
- A Foundation for Patient-Centered Core Impact Sets: Key Learnings from Past and Existing Approaches.The patient · 2023Article
- Patients as research partners in preference studies: learnings from IMI-PREFER.Research involvement and engagement · 2023Article
- Selecting patient-reported outcome measures of health-related quality of life in adult rheumatology: quality and breadth of coverage.Rheumatology international · 2023Review
- Patient and public involvement in research: a review of practical resources for young investigators.BMC rheumatology · 2023Review
- Stakeholder Engagement in Adoption, Implementation, and Sustainment of an Evidence-Based Intervention to Increase Mammography Adherence Among Low-Income Women.Journal of cancer education : the official journal of the American Association for Cancer Education · 2022Article
- Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study.RMD open · 2022Article
- Development of a core measurement set for research in degenerative cervical myelopathy: a study protocol (AO Spine RECODE-DCM CMS).BMJ open · 2022Article
- Community first response and out-of-hospital cardiac arrest: Identifying priorities for data collection, analysis, and use via the nominal group technique.Resuscitation plus · 2022Article
- Identifying potential barriers and solutions to patient partner compensation (payment) in research.Research involvement and engagement · 2022Article
- Idiopathic inflammatory myopathies.Nature reviews. Disease primers · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
23 authors.
Funding
Abstract
There is increasing interest in making patient participation an integral component of medical research. However, practical guidance on optimizing this engagement in healthcare is scarce. Since 2002, patient involvement has been one of the key features of the Outcome Measures in Rheumatology (OMERACT) international consensus effort. Based on a review of cumulative data from qualitative studies and internal surveys among OMERACT participants, we explored the potential benefits and challenges of involving patient research partners in conferences and working group activities. We supplemented our review with personal experiences and reflections regarding patient participation in the OMERACT process. We found that between 2002 and 2016, 67 patients have attended OMERACT conferences, of whom 28 had sustained involvement; many other patients contributed to OMERACT working groups. Their participation provided face validity to the OMERACT process and expanded the research agenda. Essential facilitators have been the financial commitment to guarantee sustainable involvement of patients at these conferences, procedures for recruitment, selection and support, and dedicated time allocated in the program for patient issues. Current challenges include the representativeness of the patient panel, risk of pseudo-professionalization, and disparity in patients' and researchers' perception of involvement. In conclusion, OMERACT has embedded long-term patient involvement in the consensus-building process on the measurement of core health outcomes. This integrative process continues to evolve iteratively. We believe that the practical points raised here can improve participatory research implementation.
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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.