ArticleBMC medical ethics2020
Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.
Article in BMC medical ethics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 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
37 citing papers in PubMed.
- Article
- Article
- 'Making little ethical decisions all the time': examining an ethical framework for consumer and community involvement in research, a co-produced ethnographic study.BMC medical ethics · 2025Article
- Patient and Public Involvement with Forced Migrants: An Empirical Exploration of Ethical Issues.Journal of bioethical inquiry · 2025Article
- Involvement of patient organisations in research activities: actions taken and lessons learned in a clinical research study for osteogenesis imperfecta.Orphanet journal of rare diseases · 2025Article
- The role and contribution of experts by experience in building research capacity in adult social care services: findings from the script study.Research involvement and engagement · 2025Article
- Doing community involvement care-fully: using an ethic of care to guide involvement in research on women's health after pregnancy complications and loss.Research involvement and engagement · 2025Article
- How are patient partners involved in health service research? A scoping review of reviews.Research involvement and engagement · 2025Review
- Landscape of informed consent practices and challenges in point-of-care clinical trials.Learning health systems · 2025Article
- Navigating Loss and Growth in Chronic Illness: An Interview Study on Physical Activity and Well-Being.Scandinavian journal of caring sciences · 2025Article
- Health researchers' experience collaborating with patient partners: a qualitative study.Research involvement and engagement · 2025Article
- A Qualitative Study of the Ethics of Community Scientists' Role in Environmental Health Research from the Perspective of Community Scientists and Institutional Review Board Staff.Environmental health perspectives · 2025Article
- Nano bio-robots: a new frontier in targeted therapeutic delivery.Frontiers in robotics and AI · 2025Review
- Championing Ethical Engagement of Youth in Healthcare: A Reflective Commentary.Journal of patient experience · 2025Article
- Counseling and disclosure practices in predictive Alzheimer's disease diagnostics: A scoping review.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Conducting Patient-Oriented Research in Pediatric Populations: A Narrative Review.Children (Basel, Switzerland) · 2024Review
- Enhancing patient-oriented research training: participant perceptions of an online course.Research involvement and engagement · 2024Article
- Key ingredients for successful collaboration in health research: perspectives of patient research partners.Research involvement and engagement · 2024Article
- Strategies for involving patients and the public in scaling initiatives in health and social services: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Public involvement and engagement in scientific research and higher education: the only way is ethics?Research involvement and engagement · 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
3 authors.
Funding
Abstract
backgroundPartnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues.
methodsWe conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed.
resultsWe have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics.
conclusionsWe have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.
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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.