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SYSTEMATIC REVIEW article

Front. Public Health
Sec. Public Health Education and Promotion
Volume 12 - 2024 | doi: 10.3389/fpubh.2024.1456853

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

Provisionally accepted
Loes L. Kreeftenberg Loes L. Kreeftenberg 1,2*Lidewij Henneman Lidewij Henneman 1,2Johannes Ket Johannes Ket 3Martina C. Cornel Martina C. Cornel 1,2Carla G. Van El Carla G. Van El 1,2
  • 1 Department of Human Genetics, Amsterdam University Medical Center, Amsterdam, Netherlands
  • 2 Amsterdam Public Health Research Institute, VU Medical Center, Amsterdam, Netherlands
  • 3 Medical Library, Amsterdam UMC location University of Amsterdam, Amsterdam, Netherlands

The final, formatted version of the article will be published soon.

    Introduction: Personalised 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 practices, and assess the extent and types of engagement methods used in the field of personalised prevention of common chronic conditions using genomic information. Methods: A 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 practices 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 practices across the domains of care, research, education, and governance, Results: 23 articles describing 23 engagement practices 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. Conclusion: These results suggest that most practices to engage patients and public in personalised prevention using genomic information appear to have lower levels of engagement. Elaborating on and implementing practices 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.

    Keywords: patient engagement, Public Engagement, empowerment, Personalised prevention, Personalised medicine, Genomics, precision prevention, chronic diseases

    Received: 29 Jun 2024; Accepted: 02 Sep 2024.

    Copyright: © 2024 Kreeftenberg, Henneman, Ket, Cornel and Van El. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Loes L. Kreeftenberg, Department of Human Genetics, Amsterdam University Medical Center, Amsterdam, 1105, Netherlands

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.