The project aims to increase understanding about the motivations and role of people with lived personal experience of health and social care who get involved with shaping health and care systems. It also considers what has supported or hindered them once engaged. It is intended that learning about this may support health and care organisations and professionals understand more about what is needed at a practical level to make co-production an embedded reality in integrated care.
To conduct the research, the team listened to people who have sought to influence health and care systems based on their lived experience and have heard their stories about being involved. Participants were patients, family caregivers, and community members who engaged in health and care system design in different parts of the world. Using their personal experience and that of their wider communities and networks, participants have helped to shape how professionals, organisations and indeed local and national governments have understood what is important to those in similar situations, and what person-centred and co-ordinated care will mean for them. Through hearing about their experiences, the study looks to identify what needs to change to achieve people-driven integrated care.
The research took a narrative approach and people’s experiences were heard through online interviews and group discussions conducted in Europe, the Americas and Australasia. Importantly, the work was overseen by a Community Advisory Board of people with lived experience of health and social care. Participants were also invited to two workshops to discuss and respond to findings.
Research Team:
Robin Miller – University of Birmingham
Caroline Jackson – University of Birmingham
Nieves Ehrenberg –The International Foundation for Integrated Care
Viktoria Stein – University of Leiden University Medical Centre
Wilma van der Vlegel – SevenSenses Institute
Anne Wojtak – University of Toronto
Download:
citizen_leadership_and_integrated_care_report_accessible_pdf_may_2023.pdf (3.1 MB)
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Tags
community research, co production, lived experience, patient empowerment, health systems