ArticleHealth research policy and systems2018
Patient engagement in Canada: a scoping review of the 'how' and 'what' of patient engagement in health research.
Article in Health research policy and systems, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 261 papers, 7 of them syntheses 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
261 citing papers in PubMed, 7 syntheses or guidelines pooled it.
- What makes patients engaged: a meta narrative review and multilevel perspective on patient engagement.BMC psychology · 2026Pooled it
- Patient and Public Involvement in Pharmacoepidemiological Research: An Environmental Scan of an Emerging Area.Pharmacoepidemiology and drug safety · 2025Pooled it
- Evaluation of research co-design in health: a systematic overview of reviews and development of a framework.Implementation science : IS · 2024Pooled it
- Patient engagement in perioperative settings: A mixed method systematic review.Journal of clinical nursing · 2023Pooled it
- Health engagement: a systematic review of tools modifiable for use with vulnerable pregnant women.BMJ open · 2023Pooled it
- Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter.Current oncology (Toronto, Ont.) · 2021Guideline
- Effectiveness of person- and family-centred care transition interventions on patient- oriented outcomes: A systematic review.Nursing open · 2021Pooled it
- 'It reshaped how I will do research': A qualitative exploration of team members' experiences with youth and family engagement in a randomized controlled trial.Health expectations : an international journal of public participation in health care and health policy · 2021Trial
- Developing best practices for engaging and involving palliative care patients in research in sub-Saharan Africa.Research involvement and engagement · 2026Article
- Supporting Medication Adherence in Parkinson's Through Education: A Scoping Review of Interventions.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Engaging With a Participatory Research Team: Evaluation of Involving Older Co-Researchers With Experience of Falls in the SeFallED Project.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Compensating patient partners on health research teams: a qualitative descriptive study of barriers, facilitators, and implications for equity, diversity, and inclusion in Canadian patient-oriented research.Research involvement and engagement · 2026Article
- Structured patient and public involvement programme development in low- and middle-income country health research: a scoping review of evidence gaps and a framework for future practice.Research involvement and engagement · 2026Review
- The Terminal Diner: Serving up a Novel Knowledge Exchange Methodology via Participatory Design Installation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Embedding Lived Expertise into Military and Veteran Medical Research.Military medicine · 2026Article
- Patient partnership in primary health care systems of the future: a structured priority setting exercise.Research involvement and engagement · 2026Article
- Building capacity for patient-engagement in neuromuscular disease research: A network project.Journal of neuromuscular diseases · 2026Article
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- "What I Want You to Know": Adult Women's Stories of Cleft Lip and/or Palate.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026Article
201 more citing papers are in PubMed but not listed here.
Corrections and comments
- Erratum issued
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundOver the last 10 years, patient engagement in health research has emerged as the next evolution in healthcare research. However, limited evidence about the clear role and scope of patient engagement in health research and a lack of evidence about its impact have influenced the uptake, implementation and ongoing evolution of patient engagement. The present study aims to conduct a scoping review to identify methods for and outcomes of patient engagement in health research.
methodsAn adaptation of the scoping review methodology originally described by Arksey and O'Malley and updated by Levac, Colquhoun and O'Brien was applied. Sources from a formal database search and relevant documents from a grey literature search were compiled into data extraction tables. Articles were synthesised into key themes according to the (1) methods and (2) outcomes of patient engagement in health research.
resultsThe total yield for the scoping review was 55 records from across Canada, the United Kingdom and the United States. While evidence about the methods used to engage patients in health research is increasing, stronger evidence of specific patient and healthcare system outcomes is required. This necessitates further mobilisation of research that explores outcomes and that validates specific tools to evaluate engagement. Additionally, theoretical frameworks that can better inform and sustain patient engagement across the lifecycle of health research are lacking.
conclusionFurther increasing the volume and reach of evidence about patient engagement in health research will support the paradigmatic shift needed to normalise the patient's role in research beyond 'subject' or 'participant', so as to ultimately improve patient health outcomes and better address healthcare reform in Canada.
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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.