ArticleResearch involvement and engagement2023
Comment on "Reflections on patient engagement by patient partners: How it can go wrong".
Article in Research involvement and engagement, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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
6 citing papers in PubMed.
- The Professional-Volunteer Paradox: Transforming Lived Experience into a Sense of Purpose in Dutch Oncology Patient Advocacy.The patient · 2026Article
- The Use of Patient-Reported Outcome Measures in Developmental Age: A Complementary Tool for Pediatric Multiple Sclerosis Prognosis.Neurology and therapy · 2026Review
- We need to engage representative patients' community rather than 'expert patients' to increase impact of research in the era of personalized medicine: Commentary.Multiple sclerosis (Houndmills, Basingstoke, England) · 2025Article
- Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised Medicine.Neurology and therapy · 2025Article
- Enhancing patients' role in scientific writing: insights from a global participatory approach with people with multiple sclerosis.Research involvement and engagement · 2025Article
- The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care - updates at the 2023 plenary event.Frontiers in neurology · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
As patient-advocacy, public policy and clinical researchers with special knowledge on Responsible Research Innovation (RRI) governance and the public health and psychology underlying patient engagement, we read with interest the comment contribution by Richards et al., "Reflections on patient engagement by patient partners: How it can go wrong" (Richards et al. in Res Involv Engagem 9:41, 2023. https://doi.org/10.1186/s40900-023-00454-13 ). As a way to help meet the "take-away actions for readers" included by the authors at the end of the article, we would like to further stimulate discussion with relevant stakeholder communities about the need to rethink the use of "expert patient". Based on our experience, the lack of a governance model engaging patients who are representative of the target patient community, as opposed to expert patients, is at the root of the tokenistic approach, the "patient partner as a checkmark statement" and the "lack of recognizing the vulnerability of patient partners", which results in "patient engagement going wrong". According to our experience, the Responsible Research Innovation (RRI) MULTI-ACT model has the potential to help meet these challenges.
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.