Citizen and patient engagement play a key role in the PROPHET project, as personalised prevention needs well-informed citizens and patients, able to make decisions relevant for their care and prevention, and for contributing to research. This topic is addressed by researchers from AmsterdamUMC/VUMC and partners representing citizens and patients (ACN and EPF). In the first phase of the project engagement activities were mapped via a scoping review, focusing on the domains of research, care, education and governance patient. Most articles included report on less intensive, mostly one-way activities or communication (e.g. surveys), rather than more intensive impactful engagement (e.g. patient forums).
At the PROPHET annual meeting in Stockholm, AmsterdamUMC/VUMC partner had the opportunity to present ongoing follow-up research, on best practices for engaging citizens and patients in the field of personalised prevention. Via interviews and focus groups among 29 participants this research gathered perspectives from patients and the public across 16 European countries. The discussions addressed experiences regarding engagement and communication on personalised prevention across the domains of research, care, and governance. Key topics included information accessibility and clarity, fair representation, and transparent, effective communication. The valuable insights provided were deeply appreciated, and the focus is now on advancing the collaborative work.
The full article can be accessed here: Frontiers | Engagement of patients and the public in personalised prevention in Europe using genomic information: a scoping review (frontiersin.org).