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Table 1 The Care and Future Prospects Program

From: Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

The Dutch organisation FNO – a fund that stimulates and supports initiatives improving the opportunities of vulnerable people – developed the program Care and Future Prospects (CFP). The goal of this program was to improve the social position of young people aged 0–25 with a physical or mental chronic condition in five areas: care, school, work, sport, and personal strength. To achieve this aim, forty-five research projects and innovation projects were funded. Thirty-three of these projects were funded during four open calls; twelve received specified funding (not in an open call). Output from the projects included, for example, a tool to improve self-management and a digital platform about performing physical activity with a disability.
An important element of the program was PPI of young people with a chronic condition. A participatory youth panel was set up with young people with different chronic conditions, such as diabetes, cerebral palsy and traumatic brain injury. All research and innovation projects that received funding were also asked to involve individual young people with a chronic condition that was relevant to the project. For example, projects about young people with rheumatism were asked to work together with young people with rheumatism. Later on in the program, PPI became mandatory for the projects that received funding. Project teams were allowed to decide for themselves, preferably in consultation with the young people, how they would shape the PPI in their project. Within the program, meetings were organised for project teams to share experiences and facilitate PPI.
Research on the youth panel has been reported elsewhere [25]. The current article focuses on the lessons learned from the PPI of individual young people in the research and innovation projects.