GUIDERS – Business and financing models of state-organized data trustees for health data

Background

Utilizing Health Big Data in research

"Sharing data for better care": this motto describes the potential of the large amounts of data that the healthcare system produces every day. Data from clinics, health insurance companies and other sources can be used for innovative solutions for better patient care, personalized medicine and managing diseases. This requires access to data in a structured manner instead of the current practice of data silos for individual sources. This could make health data available for secondary use in research by science and companies in particular. One model for accessing and using this data for research purposes is the data trust model (an intermediary third party).

Further developing data trustees as an opportunity for health research

State models of data trustees or organizations with data trustee structures are already common practice in various European countries. Developments such as the European Health Data Space (EHDS) at EU level or the Health Data Utilization Act (GDNG) in Germany are also shifting the focus to the underlying issues relating to data in the healthcare sector. Both legislative projects are intended to define a framework for the use of health data, in which matters of access and data use are directly linked to fiduciary management. Various research activities have also been carried out at both national and European level, e.g. on the design of data trustees, focusing primarily on legal, technological or organizational aspects, while economic aspects have so far only been considered to a limited extent. In order to advance the implementation of a state data trustee model for health data, the role of business and financing models must also be analyzed in more detail.

Project description

Business and financing models for data trustees

The GUIDERS project aims to explore new approaches for the development of viable business models and potential financing models for state-organized data trustees, especially with regard to health data, and thus make a practical and solution-oriented contribution to the development of data trustees in the healthcare sector. The research questions posed in the project are:

• How could the business models of state health data trustees be structured?
• Which funding and revenue generation options are possible for public health data trustees?

Range of services

Evaluation of best practices and recommended course of action

With the help of a systematic literature review and desk research, the researchers at Fraunhofer IMW identify and analyze existing international, European and national state data trustees with a focus on their business models and associated best practices. They then conduct semi-structured expert interviews focusing on business and financing models. Based on this, archetypes of business models can be developed and evaluated for their practicability with the help of a further interview study. The socio-economic expertise and broad domain knowledge in the field of digital health form the basis for the development.

Project duration

1.10.2023–31.12.2025

Clients