ArticleBMJ open2022
Understanding patient partnership in health systems: lessons from the Canadian patient partner survey.
Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 papers, 1 of them a synthesis that pooled it.
What it found
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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
39 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis.Health research policy and systems · 2023Pooled it
- Developing Best Practices in Co-Production With Lived Experience Experts in Bipolar Research: Insights From the AMBIENT-BD Lived Experience Advisory Panel.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Creating shared vision in patient partnered research: a case example of patient engagement from the PAVE project (producing an arthritis value framework with economic evidence: paving the way for rare childhood disease).Research involvement and engagement · 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
- The Ethical Foundations of Accompanying Patients: The Need for Institutionalization.Journal of bioethical inquiry · 2026Article
- Building capacity for patient-engagement in neuromuscular disease research: A network project.Journal of neuromuscular diseases · 2026Article
- Shaping collaborative practice: a qualitative case study of educators' experiences in integrated interprofessional education.BMC medical education · 2026Article
- Evaluation of the Diabetes Action Canada (DAC) Research-To-Action Fellowship Program for Patient Partners: A Multi-Method Case Study.Journal of patient experience · 2026Article
- Operationalizing Trauma-Informed Principles to Build Safe, Inclusive, and Equitable Patient Partnerships in Pediatric Pain Research.Journal of pain research · 2026Article
- Recognition, remuneration and reimbursement of patient and public involvement partners in pragmatic randomised controlled trials. A survey of author practices.Research involvement and engagement · 2025Article
- Emergency department pathway for pain management using DELPHI approach and criticality analysis.Scientific reports · 2025Article
- Article
- Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study.Journal of participatory medicine · 2025Article
- Critical patient-oriented research: a fundamental shift in patient engagement.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2025Article
- Advancing patient-led research and establishing a national IBD patient partner network in Canada: a call to action.Journal of the Canadian Association of Gastroenterology · 2025Article
- The Consolidated Approach to Intervention Adaptation (CLARION): Developing and undertaking an empirically and theoretically driven intervention adaptation.Implementation science communications · 2025Article
- Patient engagement strategies in digital health interventions for cancer survivors: A scoping review.PLOS digital health · 2025Article
- Patient involvement in the biopsychosocial integrated primary care model: A qualitative study in three health districts of South Kivu, Democratic Republic of Congo.PLOS global public health · 2025Article
- The role of patients, caregivers, and communities in Learning Health Systems: a narrative review.Frontiers in health services · 2025Review
- Building Engagement-Capable Environments for Health System Transformation: Development and Early Implementation of a Capability Framework for Patient, Family and Caregiver Engagement in Ontario Health Teams.Health expectations : an international journal of public participation in health care and health policy · 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
12 authors.
Funding
Abstract
objectivesTo examine the sociodemographic characteristics, activities, motivations, experiences, skills and challenges of patient partners working across multiple health system settings in Canada.
designOnline cross-sectional survey of self-identified patient partners.
settingPatient partners in multiple jurisdictions and health system organisations.
participants603 patient partners who had drawn on their experiences with the health system as a patient, family member or informal caregiver to try to improve it in some way, through their involvement in the activities of a group, organisation or government.
resultsSurvey respondents predominantly identified as female (76.6%), white (84%) and university educated (70.2%) but were a heterogeneous group in the scope (activities and organisations), intensity (number of hours) and longevity (number of years) of their role. Primary motivations for becoming a patient partner were the desire to improve the health system based on either a negative (36.2%) or positive (23.3%) experience. Respondents reported feeling enthusiastic (83.6%), valued (76.9%) and needed (63.3%) always or most of the time; just under half felt they had always or often been adequately compensated in their role. Knowledge of the health system and the organisation they partner with are key skills needed. Two-thirds faced barriers in their role with over half identifying power imbalances. Less than half were able to see how their input was reflected in decisions or changes always or most of the time, and 40.3% had thought about quitting.
conclusionsThis survey is the first of its kind to examine at a population level, the characteristics, experiences and dynamics of a large sample of self-identified patient partners. Patient partners in this sample are a sociodemographically homogenous group, yet heterogeneous in the scope, intensity and longevity of roles. Our findings provide key insights at a critical time, to inform the future of patient partnership in health systems.
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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.