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 provides users with 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 parameters daily. But what happens to the collected data? Is it stored on the smartphone, or are the data stored on servers? Who has access, and what are the possible implications for the end user? Many health insurance companies already offer their customers digital self-tracking options today. As part of telemedicine, so-called telemonitoring is also becoming more prevalent. In this case, the patient independently measures health values, for example, with a blood pressure monitor connected to the smartphone via Bluetooth. The data is then shared with a doctor or other medical facility. Since January 2022, telemonitoring has been fully reimbursed by health insurance companies for chronic heart failure. This decision by the G-BA lays the foundation for the introduction of telemonitoring into standard care. In practice, however, patients and doctors are often critical of the new technology. There is a lack of knowledge and trust in what ultimately happens to the collected health data. Often, the only source of information is small-print, lengthy terms and conditions and privacy policies 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 leader of the R&D project "TESTER", explains: "The essential obstacle to self-determined handling of self-tracking data is not the individual's lack of rights, but rather the lack of transparency and the practical difficulties in perceiving them. The TESTER project is intended to make an important contribution in this area." One of the project's goals is to understand the user's need for handling collected vital parameters. What information does the user want to be presented with and when, so that they understand what happens with 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 educate and support the user in handling their health data. Our task as a software partner is to create the technical prerequisites, such as a data protection-compliant system. For example, a backend based on the international medical communication standards HL7 FHIR is suitable for this. Additionally, we apply our experience in app development to technically implement the research results gathered by our cooperation partners.

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