ReviewResearch involvement and engagement2020
Partnering with frail or seriously ill patients in research: a systematic review.
Review in Research involvement and engagement, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis 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
23 citing papers in PubMed, 1 synthesis or guideline pooled it, 46 citations in OpenAlex.
- How are health research partnerships assessed? A systematic review of outcomes, impacts, terminology and the use of theories, models and frameworks.Health research policy and systems · 2022Pooled it
- Questions for more insightful and useful analyses of barriers and facilitators to public involvement and engagement in health research: a critical narrative review.Research involvement and engagement · 2026Review
- A global multilingual cocreation of aphasia priority topics through patient and public involvement.Research involvement and engagement · 2026Article
- Patient and public involvement in pragmatic trials with older adults: a multi-methods study of researchers' experiences.BMC geriatrics · 2026Article
- Co-production as the ultimate goal; an incentive or discouragement?Research involvement and engagement · 2025Article
- Research in Partnership With Older People-Involvement in Conducting and Analysing Focus Groups.Health expectations : an international journal of public participation in health care and health policy · 2025Observational
- How are patient partners involved in health service research? A scoping review of reviews.Research involvement and engagement · 2025Review
- Rehabilitation for Physical Frailty in Lung Transplant Candidates: A Systematic Review.Cardiopulmonary physical therapy journal · 2025Article
- Article
- Translational studies on pancreatic cancer and gastric cancer: a methodology in PhD thesis.Frontiers in pharmacology · 2025Article
- Co-producing and co-assessing a new service solution for enhancing health and social care integration: a participatory research protocol.BMC health services research · 2024Article
- Emotion in public involvement: A conceptual review.Health expectations : an international journal of public participation in health care and health policy · 2024Review
- Evaluation of an integrated knowledge translation approach used for updating the Cochrane Review of Patient Decision Aids: a pre-post mixed methods study.Research involvement and engagement · 2024Article
- A patienthood that transcends the patient: An analysis of patient research partners' narratives of involvement in a Canadian arthritis patient advisory board.Journal of health services research & policy · 2024Article
- Research Coproduction: How Can Coproduction Teams Increase Traffic on the Pathway to Impact? Comment on "Research Coproduction: An Underused Pathway to Impact".International journal of health policy and management · 2024Article
- Including the voice of older people in the co-design of perioperative pathways of care.Future healthcare journal · 2023Article
- Then there were seven: a commentary on creating a public involvement strategy group for a policy research unit in behavioural science.Research involvement and engagement · 2023Article
- Engaging people with lived experience on advisory councils of a national not-for-profit: an integrated knowledge translation case study of Heart & Stroke Mission Critical Area Councils.Health research policy and systems · 2022Article
- The impacts of partnering with cancer patients in palliative care research: a systematic review and meta-synthesis.Palliative care and social practice · 2022Review
- Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study.Journal of medical Internet research · 2021Review
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 at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe expectation to include patients as partners in research has steadily gained momentum. The vulnerability of frail and/or seriously ill patients provides additional complexity and may deter researchers from welcoming individuals from this patient population onto their teams. The aim was to synthesize the evidence on the engagement of frail and/or seriously ill patients as research partners across the research cycle.
methodsA systematic review was conducted using PRISMA guidelines. A search strategy included MEDLINE®, EMBASE®, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO from database inception to April, 2019. Eligible studies were peer-reviewed qualitative, quantitative, and mixed methods research reporting on the engagement of frail and/or seriously ill patients as partners on research teams. The Mixed Methods Appraisal Tool was used to appraise study quality. Narrative analysis was conducted.
resultsOf 8763 citations, 30 were included. Most studies included individuals with cancer on the research team (60%). Barriers included: lack of time and resources (50%), discontinuity in contribution (37%), and concerns for well-being (33%). Facilitators included: trust and mutual respect (60%), structural accessibility (57%), flexibility in timing and methods of engagement (43%), and attention to care and comfort, (33%). Perceived impacts for patients included: renewed personal sense of agency (37%) and emotional/peer support (37%). Impacts for researchers included sensitization to the lived experience of disease (57%) and an increased appreciation of the benefits of patient engagement (23%). Research design, execution, and outcomes, developed with patients, were deemed more suitable, relevant and reflective of patients' priorities.
conclusionsThere is emerging evidence to suggest that research partnerships with frail and/or seriously ill patients can be achieved successfully. Patients mostly report benefit from partnering with research teams. Frailty and/or serious illness do present legitimate concerns for their well-being but appear to be successfully mitigated when researchers ensure that the purpose of engagement is well-defined, the timing and methods of engagement are flexible, and the practical and emotional needs of patient partners are addressed throughout the process. SYSTEMATIC REVIEW REGISTRATION: The systematic review protocol was registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).
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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.