Developing a Data Trust Model (Not Only) for Sleep Research: Conceptual Study and Quantitative Survey.

ABSTRACT:

Background

A large amount of data are generated in health care facilities, yet it is rarely made available for secondary research use. The reasons are manifold. Most importantly, different stakeholders' needs must be balanced. However, there are currently hardly any feasible solutions for this.

Objective

This study aimed to develop a data trust model with supporting user interface applications to provide a legally and ethically sound framework for secondary use of medical data. The development was based on extensive surveys of various stakeholders.

Methods

Semistructured interviews were conducted with researchers (data users) and institutional representatives of the Medical Center-University of Freiburg, and online questionnaires were administered to patients (data su

SUBMITTER: Dressle RJ 

PROVIDER: S-EPMC12671904 | biostudies-literature | 2025 Dec

REPOSITORIES: biostudies-literature