ArticleResearch involvement and engagement2023
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 55 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
55 citing papers in PubMed.
- Adjusting the 15-method to Danish general practice: a participatory design approach.Scandinavian journal of primary health care · 2026Article
- Patient Engagement Activities and Infrastructure Among US Veterans Affairs National Research Networks.Journal of general internal medicine · 2026Article
- "We don't get asked": including people with workforce experience as public contributors in a workforce-related study about homecare work towards the end-of-life.Research involvement and engagement · 2026Article
- Frameworks for Action: A Scoping Review of Organisational Patient Engagement Models in Healthcare.The International journal of health planning and management · 2026Article
- Disrupting power hierarchies: applying a trauma- informed, intersectional, reflexive engagement strategy.Research involvement and engagement · 2026Article
- A qualitative descriptive study to explore evaluation and effects of partnered rehabilitation research in Canada.Health research policy and systems · 2026Article
- The Ethical Foundations of Accompanying Patients: The Need for Institutionalization.Journal of bioethical inquiry · 2026Article
- "I am struggling to find an explicit task"-a midterm evaluation of patient research partner involvement in HIPPOCRATES translational research.EULAR rheumatology open · 2026Article
- "Truly having a conversation with each member about their needs": accessibility considerations for the engagement of people with lived and living experience and caregivers in mental health and substance use health research.Research involvement and engagement · 2026Article
- Patients as Partners in Perinatal Health Research: A Scoping Review.BJOG : an international journal of obstetrics and gynaecology · 2026Article
- No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement.Health expectations : an international journal of public participation in health care and health policy · 2026Review
- Consumer Engagement in Chronic Conditions Research: An Integrated Framework Informed by Recognition Theory.Health expectations : an international journal of public participation in health care and health policy · 2026Article
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- Addressing ableism in healthcare: integrating critical disability theory into health services research.International journal for equity in health · 2025Review
- Mixed identity is an identity: embracing the people involved in research partnerships.BMJ open · 2025Review
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- Critical patient-oriented research: a fundamental shift in patient engagement.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2025Article
- Improving the reporting on health equity in observational research (STROBE-Equity): extension checklist and elaboration.BMJ (Clinical research ed.) · 2025Article
- Targeting everyday decision makers in research: early career researcher and patient and public involvement and engagement collaboration in an AI-in-healthcare project.Research involvement and engagement · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to "meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation" with patient partners as members of teams, rather than participants in research or clinical care. While much has been written about the benefits of patient engagement, it is important to accurately document and share what we term 'patient engagement gone wrong.' These examples have been anonymized and presented as four statements: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners. The examples provided are intended to demonstrate that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light. This article is not intending to lay blame, rather to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these conversations as that is the only way to change these all too recognizable examples, and which will lead to better project outcomes and experiences for all team members.
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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.