Transparency and responsible handling of health data

Together with the Fraunhofer Institute, the University of Stuttgart, the University of Kassel and the VDI, ACTIMI is working on an app as part of the “TESTER” research project that gives the user transparency and control over independently collected health data.

Fitness trackers, smartwatches and health apps have been commonplace for years. Many people measure their blood pressure, oxygen saturation, weight and many other vital signs every day. But what happens to the data collected? Are they stored on the smartphone or is the data stored on servers? Who has access and what are the possible consequences for the end user?

Many health insurance companies already offer their customers digital self-measurement services. Telemonitoring is also becoming increasingly popular as part of telemedicine. The patient measures health values independently. For example, with a blood pressure monitor that is connected to the smartphone via Bluetooth. The data is then shared with a doctor or other medical institution.

Since January 2022, telemonitoring for chronic heart failure has been fully reimbursed by health insurance companies. This decision by the G-BA lays the foundation for the introduction of telemonitoring into standard care. In practice, however, patients and doctors are critical of the new technology. There is a lack of knowledge and trust as to what ultimately happens to the health data collected. The only information channel is often small-print, page-long terms and conditions and data protection declarations with standard clauses.

A real understanding of what happens with which data is often not created. Uwe Laufs, researcher at the Fraunhofer Institute for IAO and project manager of the R&D project “TESTER” explains: “The main obstacle to the self-determined handling of data from self-measurement is not a lack of individual rights, but a lack of transparency and the practical problems involved in exercising these rights. The TESTER project is intended to make an important contribution here“.

The aim of the project is, among other things, to understand user needs in relation to the handling of collected vital parameters. What information would the user like to be presented with and when, so that they understand what happens to the collected data afterwards? What functions should the app have so that the user can control the collection of their data? For example, the so-called “Privacy Assistant” is being considered. This is intended to inform and support the user in handling their health data.

Our task as a software partner is to create the basic technical requirements, such as a data protection-compliant system. For example, a backend based on the international medical communication standard HL7 FHIR is suitable here. We also use our experience in app development to technically implement the research results collected by our cooperation partners.