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Related Experiment Video

Updated: Jul 10, 2025

Digital Home-Monitoring of Patients after Kidney Transplantation: The MACCS Platform

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Published on: April 12, 2021

Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.

Roberta Biasiotto^1,2, Jennifer Viberg Johansson³, Melaku Birhanu Alemu^4,5

¹Institute for Biomedicine (Affiliated Institute of the University of Lübeck), Eurac Research, Bolzano, Italy.

Journal of Medical Internet Research

|November 23, 2023

Summary

European public preferences for digital health data sharing emphasize transparency and consent. Findings highlight a need for data governance solutions that empower individuals to control their health information across diverse contexts.

Keywords:

Europe data sharing data use digital health data discrete choice experiment governance preferences secondary use of data

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Area of Science:

Digital Health
Bioethics
Public Health Policy

Background:

New technologies enable extensive collection and diverse uses of health data.
Public acceptance of digital health data sharing is crucial for European data governance policies.

Purpose of the Study:

To investigate European residents' preferences regarding digital health data sharing.

Main Methods:

A discrete choice experiment survey was conducted with 5015 participants across 12 European countries.
Latent class models analyzed preferences based on data collector, user, reason, consent, and review process attributes.
Attribute importance was calculated for pooled and regional data sets.

Main Results:

Transparency and consent were the most critical factors for acceptable health data sharing.
Four distinct preference patterns were identified, with significant heterogeneity across Europe.
Acceptable data sharing involved national authorities or research institutions, with informed consent and oversight; commercial use was least acceptable.

Conclusions:

Transparency and oversight are vital for European health data sharing.
Heterogeneity in preferences necessitates flexible governance, granting individuals control over their digital health data.
Dynamic consent models and oversight mechanisms can support harmonized European health data use.