Factors Affecting Citizen Trust and Public Engagement Relating to the Generation and Use of Real-World Evidence in Healthcare

Denis Horgan, Bettina Borisch, Ivana Cattaneo, Mark Caulfield, Arturo Chiti, Christine Chomienne, Amanda Cole, Karen Facey, Allan Hackshaw, Minna Hendolin, Nadia Georges, Dipak Kalra, Birutė Tumienė and Martina von Meyenn
Additional contact information
Denis Horgan: European Alliance for Personalised Medicine, 1040 Brussels, Belgium
Bettina Borisch: Department of Histopathology, University of Geneva, 1202 Geneva, Switzerland
Ivana Cattaneo: Novartis Farma SpA, 21040 Origgio, Italy
Mark Caulfield: NIHR Barts Biomedical Research Centre, William Harvey Research Institute, Queen Mary University of London, London EC1M 6BQ, UK
Arturo Chiti: Department of Biomedical Sciences, Humanitas University, Via Rita Levi Montalcini 4, Pieve Emanuele, 20090 Milan, Italy
Christine Chomienne: Cell Biology-Hematology Department, Université de Paris INSERM, 75010 Paris, France
Amanda Cole: Office of Health Economics, London SW1E 6QT, UK
Karen Facey: Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh EH8 9YL, UK
Allan Hackshaw: Faculty of Medical Sciences, University College London, London W1T 4TJ, UK
Minna Hendolin: Sitra—The Finnish Innovation Fund, 00180 Helsinki, Finland
Nadia Georges: Exact Sciences, 1201 Geneva, Switzerland
Dipak Kalra: Faculty of Medicine and Health Sciences, University of Ghent, 9000 Ghent, Belgium
Birutė Tumienė: Vilnius University Hospital Santariskiu Klinikos, 08661 Vilnius, Lithuania
Martina von Meyenn: F. Hoffmann-La Roche AG, 4070 Basel, Switzerland

IJERPH, 2022, vol. 19, issue 3, 1-18

Abstract: The potential for the use of real-world data (RWD) to generate real-world evidence (RWE) that can inform clinical decision-making and health policy is increasingly recognized, albeit with hesitancy in some circles. If used appropriately, the rapidly expanding wealth of health data could improve healthcare research, delivery of care, and patient outcomes. However, this depends on two key factors: (1) building structures that increase the confidence and willingness of European Union (EU) citizens to permit the collection and use of their data, and (2) development of EU health policy to support and shape data collection infrastructures, methodologies, transmission, and use. The great potential for use of RWE in healthcare improvement merits careful exploration of the drivers of, and challenges preventing, efficient RWD curation. Literature-based research was performed to identify relevant themes and discussion topics for two sets of expert panels, organized by the European Alliance for Personalised Medicine. These expert panels discussed steps that would enable a gradual but steady growth in the quantity, quality, and beneficial deployment of RWE. Participants were selected to provide insight based on their professional medical, economic, patient, industry, or governmental experience. Here, we propose a framework that addresses public trust and access to data, cross-border governance, alignment of evidence frameworks, and demonstrable improvements in healthcare decisions. We also discuss key case studies that support these recommendations, in accordance with the discussions at the expert panels.

Keywords: citizen trust; real-world evidence; real-world data; evidence framework (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
References: View references in EconPapers View complete reference list from CitEc
Citations:

Downloads: (external link)
https://www.mdpi.com/1660-4601/19/3/1674/pdf (application/pdf)
https://www.mdpi.com/1660-4601/19/3/1674/ (text/html)

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:gam:jijerp:v:19:y:2022:i:3:p:1674-:d:740237

Access Statistics for this article

IJERPH is currently edited by Ms. Jenna Liu

More articles in IJERPH from MDPI
Bibliographic data for series maintained by MDPI Indexing Manager ().