ArticleCurrent oncology (Toronto, Ont.)2023
Patient Engagement in Health Research: Perspectives from Patient Participants.
Article in Current oncology (Toronto, Ont.), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 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
28 citing papers in PubMed, 37 citations in OpenAlex.
- Outcomes That Matter in Gastrointestinal Cancer Care: A Focus Group Study of Patient-Centred Outcomes Identified by Patients and Care Partners.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Evolving Roles for Patients as Partners in a National Kidney Health Research Network: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Patient and public involvement in pragmatic trials with older adults: a multi-methods study of researchers' experiences.BMC geriatrics · 2026Article
- Co-creating discovery in basic science: Challenges and opportunities in patient-partnered research for rare liver disease.Canadian liver journal · 2026Article
- Development of a Patient and Carer Advisory Board to Co-Design Health Services Research for the Quality of Care of People With Dementia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Development of a patient advocate committee for a pediatric biobank.Research involvement and engagement · 2026Article
- 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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- Involving consumers in health research through the use of consumer panels: a scoping review.Research involvement and engagement · 2025Review
- Improving the reporting on health equity in observational research (STROBE-Equity): extension checklist and elaboration.BMJ (Clinical research ed.) · 2025Article
- A Training Program to Support Patient Engagement in Primary Health Care Research: Co-Design, Implementation, and Evaluation Study.Journal of participatory medicine · 2025Article
- A multi-method evaluation of how equity deserving communities were engaged in research.BMC public health · 2025Article
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- Patient partner engagement in the publication process: challenges and possible solutions.BMC medical research methodology · 2025Review
- Opioid analgesics for chronic noncancer pain in patients prescribed opioid agonist therapy or with opioid use disorder: A systematic review.Canadian journal of pain = Revue canadienne de la douleur · 2025Review
- Community case study of patient and clinician early engagement in research on multiple chronic conditions using an implementation guide.Frontiers in medicine · 2025Article
- Developing a congenital hyperinsulinism prioritized research agenda: a patient-driven international collaborative research network.Frontiers in endocrinology · 2025Article
- Assessing the context within academic health institutions toward improving equity-based, community and patient-engaged research.Journal of clinical and translational science · 2025Article
- Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework.The patient · 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
8 authors at 3 institutions in 1 country.
Funding
Abstract
background and purposeOver the past decade, patient engagement (PE) has emerged as an important way to help improve the relevance, quality, and impact of health research. However, there is limited consensus on how best to meaningfully engage patients in the research process. The goal of this article is to share our experiences and insights as members of a Patient Advisory Committee (PAC) on a large, multidisciplinary cancer research study that has spanned six years. We hope by sharing our reflections of the PAC experiences, we can highlight successes, challenges, and lessons learned to help guide PE in future health research. To the best of our knowledge, few publications describing PE experiences in health research teams have been written by patients, survivors, or family caregivers themselves.
methodsA qualitative approach was used to gather reflections from members of the Patient Advisory Committee regarding their experiences in participating in a research study over six years. Each member completed an online survey and engaged in a group discussion based on the emergent themes from the survey responses.
resultsOur reflections about experiences as a PAC on a large, pan-Canadian research study include three overarching topics (1) what worked well; (2) areas for improvement; and (3) reflections on our overall contribution and impact. Overall, we found the experience positive and experienced personal satisfaction but there were areas where future improvements could be made. These areas include earlier engagement and training in the research process, more frequent communication between the patient committee and the research team, and on-going monitoring regarding the nature of the patient engagement.
conclusionsEngaging individuals who have experienced the types of events which are the focus of a research study can contribute to the overall relevance of the project. However, intentional efforts are necessary to ensure satisfactory involvement.
Indexed as
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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.