An individual who experienced care in the healthcare system (as a patient, family member or caregiver) and who, as part of a patient group (e.g., patient/family council), engages in shaping decisions, policies, and/or practices at all system levels.
- Engaging Patients in Patient safety – A Canadian Guideline: Glossary of terms: https://www.healthcareexcellence.ca/en/resources/engaging-patients-in-patient-safety-a-canadian-guide/glossary-of-terms/
To go in depth
The Patient-as-Partner Approach in Health Care
A publication that explains how the University of Montreal has implemented the Patient Partnership approach
- Karazivan P et al. The Patient-as-Partner Approach in Health Care. A Conceptual Framework for a Necessary Transition. Academic Medicine 2015; 90(4):437-441: https://journals.lww.com/academicmedicine/fulltext/2015/04000/the_patient_as_partner_approach_in_health_care__a.15.aspx
Giving voice to patient and public
An Interesting overview on how in England the National Health Service (NHS) supports patient and public voice (PPV) partners and people with lived experience to be involved in its work.
- NHS England Patient and Public Voice Partners Policy: https://www.england.nhs.uk/get-involved/resources/patient-public-voice-partners
How to involve the patient from the beginning
A short guide on patient partnerships in Rare Disease Research Projects on how to engage patients at an earlier stage in the biomedical research and development process.
- PENREP (Patient Engagement in Biomedical Research Projects). Short guide on patient partnerships in rare disease research projects. 2020: https://www.ejprarediseases.org/SHORT-GUIDE-ON-PATIENT-PARTNERSHIPS-IN-RARE-DISEASE-RESEARCH-PROJECTS.pdf
Preparing society for the future of health
From the Centre of Excellence for Partnership with Patients and the Public (CEPPP), a global pioneer in the science of patient partnership 7 must-read articles to better understand and deploy what is Patient and Public Partnerships
- Centre of Excellence for Partnership with Patients and the Public (CEPPP): https://ceppp.ca/en/news/what-is-patient-and-public-partnership
Looking for a patient partner role
A study that aims to explore patient partners’ motivations for engagement and understanding of their role.
- Chudyk AM et al. Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study. Res Involv Engagem 2023; 9: 106: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-023-00511-9
