ReviewResearch involvement and engagement2021
Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review.
Review in Research involvement and engagement, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 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
8 citing papers in PubMed.
- Motivations and experiences of patients with respiratory disease and their caregivers in a multinational trial of mirtazapine for severe breathlessness: a qualitative study (BETTER-B).BMC pulmonary medicine · 2025Trial
- Dysphagia Symptoms in Patients with Postural Orthostatic Tachycardia Syndrome (POTS): A Qualitative Study.Neurology international · 2026Article
- '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
- Ethical Challenges in Research Involving Hospitalized Patients: A Phenomenological Study.Health care analysis : HCA : journal of health philosophy and policy · 2025Article
- The COVID-19 Pandemic, Geroscience, and Intersectional Dimensions of Health and Well-being.The journals of gerontology. Series A, Biological sciences and medical sciences · 2024Article
- Emotion in public involvement: A conceptual review.Health expectations : an international journal of public participation in health care and health policy · 2024Review
- Meeting ethical challenges with authenticity when engaging patients and families in end-of-life and palliative care research: a qualitative study.BMC palliative care · 2022Article
- Fit for purpose. Co-production of complex behavioural interventions. A practical guide and exemplar of co-producing a telehealth-delivered exercise intervention for people with stroke.Health research policy and systems · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
backgroundThe commitment to engage patients as partners in research has been described as a political, moral and ethical imperative. Researchers feel ill-equipped to deal with potential ethical implications of engaging patients as partners. The aim of this study is to identify the ethical considerations related to engaging frail and seriously ill (FSI) patients as partners in research.
methodsWe conducted a sub-analysis of a prior systematic review of 30 studies that engaged FSI patients as partners in research. Studies were included if they reported ethical considerations associated with partnering. We performed deductive content analysis, data were categorized according to Beauchamp and Childress' Principles of Biomedical Ethics (2019): autonomy, non-maleficence, beneficence, and justice.
resultsTwenty-five studies were included. Common ethical considerations reported in relation to the principles were: autonomy - promoting desired level of involvement, addressing relational and intellectual power, facilitating knowledge and understanding of research; non-maleficence - protection from financial burden, physical and emotional suffering; beneficence - putting things right for others, showing value-added, and supporting patient-partners; and, justice - achieving appropriate representation, mutual respect for contributions, and distributing risks and benefits.
conclusionsWhen partnering with FSI patients, research teams need to establish shared values and ensure processes are in place to identify and address ethical issues. Researchers and patients should work together to clarify the intent and outcomes of the partnership, actively address power differentials, recognize and minimize the potential for unintended harm, and strive to maximize the benefits of partnership. SYSTEMATIC REVIEW REGISTRATION: The protocol for the original systematic review has been registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).
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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.