Personalised prevention: what patients and citizen advocates want for better engagement - a qualitative study

BACKGROUND: Incorporating public and patient perspectives is essential to advancing personalised prevention. Personalised prevention focuses on preventing disease onset, progression, and recurrence by tailoring interventions on the basis of an individual's biological, environmental, behavioural, socioeconomic, and cultural characteristics. This study explored what patients and the public want for better engagement and empowerment in prevention, aiming to develop key considerations across three domains (Research, Care, and Governance), and offering practical points to consider for improving personalised prevention strategies.

METHODS: In cocreation with the European Patients Forum (EPF) and Cittadinanzattiva APS-Active Citizenship Network (ACN), semi-structured individual interviews and focus groups were conducted with 29 participants, comprising of 17 citizen advocates and 12 patients (including advocates) across 16 European countries, with experience in seven distinct disease groups. The participants were recruited through ACN and EPF via newsletters and mailing lists. Thematic analysis was performed via MAXQDA software. This study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ).

RESULTS: Findings were clustered into three key themes for better engagement in personalised prevention: (i) Information and Communication, where patients and the public emphasised the need for clear and accessible health information and user-friendly digital platforms; (ii) Representation and Inclusivity, highlighting calls for inclusive research, community engagement, and mental health integration; and (iii) Ethical and Regulatory Considerations, with concerns over equity and the potential shift from solidarity-based care to individual risk assessment, underscoring the need for robust privacy protection and equitable policies.

CONCLUSIONS: Enhancing patient and public engagement in personalised prevention requires more focus on communication, inclusivity, and secure data use. The findings provide actionable insights, promoting systematic engagement across Research, Care, and Governance. Clear information about prevention strategies and treatment options must be accessible, while diverse voices should be represented in decision-making. Collaboration with communities and better use of patient data can enhance prevention efforts. Policies should ensure ethical implementation, address data protection, and promote equity, transparency, and patient and public empowerment in healthcare, ultimately fostering a more inclusive approach to personalised prevention.