Engagement of patients and the public in personalised prevention in Europe using genomic information: a scoping review

Abstract

IntroductionPersonalised prevention using genomic information requires active involvement from patients and the public, who should be well-informed and empowered to make healthcare decisions that reflect their personal values. We aimed to map engagement practises, and assess the extent and types of engagement methods used in the field of personalised prevention of common chronic conditions using genomic information.MethodsA scoping review on selected literature (in Medline, Embase, Scopus, Web of Science, APA PsycINFO, and IBSS) from 2015 to 2023 was performed. Articles included described practises of patient and public engagement in personalised prevention and genomics conducted in Europe focusing on cancer, cardiovascular diseases and neurodegenerative disorders. Engagement was explored based on grouping practises across the domains of care, research, education, and governance.ResultsA total of 23 articles describing 23 engagement practises were selected. Analysis revealed diverse engagement levels, the majority falling into the low to medium engagement category, and showing mainly unidirectional methods of engagement, especially consultation. Most engagement activities related to cancer, and none to neurodegenerative disorders. Most publications appeared in the care domain, followed by the research domain, a combination of research and care, and a combination of governance and education.ConclusionThese results suggest that most practises to engage patients and public in personalised prevention using genomic information appear to have lower levels of engagement. Elaborating on and implementing practises that engage and empower patients and the public at all levels of the engagement spectrum and for all chronic diseases is needed, fostering a more inclusive and participatory approach to personalised prevention.