ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Participatory codesign of patient involvement in a Learning Health System: How can data-driven care be patient-driven care?
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers.
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Who cites it
26 citing papers in PubMed.
- Facilitators and barriers to patient and public involvement in developing learning health systems within community health services: ascoping review.Research involvement and engagement · 2026Review
- Improving the Accessibility of Consumer Orientation: Co-Designing Infection Control Training for Consumers Partnering With Health Services.Health expectations : an international journal of public participation in health care and health policy · 2026Article
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- Improving Diagnosis: Evaluation of Diagnostic Experiences Classified as Problems, Mistakes, or Both by Patients and Care Partners From a Nationally Representative Survey.Medical care · 2026Article
- Moving forward, leaving the patients behind? A multilevel assessment framework for evaluating patient-centred, integrated care quality.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Review
- Operationalising Inclusion for Participatory Design: Worked Examples for TRIPOD+AI & PROBAST+AI.Health services insights · 2026Article
- Review
- Patient Roles and Patient Knowledge in Learning Health Systems.The International journal of health planning and management · 2026Article
- Article
- Equipping Change Agents: Applying Mixed Methods to Learn About the Outcomes of the Co-Designed Caregiver-Centered Care Champions Education Program.International journal of environmental research and public health · 2025Article
- Charting progress in learning health systems: A systematic review of 5 years of definitions, models, and frameworks.Learning health systems · 2025Article
- Integrating knowledge systems for holistic approaches to addressing knowledge and health inequities: combining fuzzy cognitive maps.Global health promotion · 2025Article
- [A qualitative interview study to streamline integration of patient participation in research].Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)) · 2025Article
- Article
- Review
- Transforming Care Through Co-Design: Developing Inclusive Caregiver-Centered Education in Healthcare.Healthcare (Basel, Switzerland) · 2025Article
- Jargon and Readability in Plain Language Summaries of Health Research: Cross-Sectional Observational Study.Journal of medical Internet research · 2025Observational
- The role of patients, caregivers, and communities in Learning Health Systems: a narrative review.Frontiers in health services · 2025Review
- Empowering partnership: key lessons from the co-development of patient-oriented research with parents, researchers, and healthcare professionals.Frontiers in health services · 2025Article
- Postsurgical Pain Risk Stratification to Enhance Pain Management Workflow in Adult Patients: Design, Implementation, and Pilot Evaluation.JMIR perioperative medicine · 2024Article
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Authors and funding
10 authors.
Funding
Abstract
backgroundA Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating 'virtuous cycles' between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being 'data donors' rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS.
designTen participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs.
resultsThe contributors proposed three exemplar roles for patients in patient-driven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. 'Epistemic injustice' was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice). DISCUSSION: Patient involvement in an LHS should be 'with and by' patients, not 'about or for'. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a 'virtuous alliance' to achieve change. PATIENT OR PUBLIC CONTRIBUTION: Public contributors were active partners throughout, and co-authored the paper.
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