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, Martina Von Meyenn

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output

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
Original languageEnglish
Pages (from-to)1674
JournalInternational Journal of Environmental Research and Public Health
Issue number3
Publication statusPublished - 1 Feb 2022


Dive into the research topics of 'Factors Affecting Citizen Trust and Public Engagement Relating to the Generation and Use of Real-World Evidence in Healthcare'. Together they form a unique fingerprint.

Cite this