Making sense of my own Health Data

Making Sense of my own Health Data

A Citizen Science Approach to Personal Health Tracking

Background

Smart watches, activity trackers, smart scales and other connected health devices are becoming increasingly popular. Many users use them to collect personal health data - often over a period of years. So far, however, it is unclear how they experience data collection with these devices in their everyday lives, whether they understand the data they collect with them, and what they use the data for. The goal of the Making Sense project is to better understand how users interact with their personal health devices and

the data they trackdata in everyday life. OFFIS will intensively accompany a total of 15 study participants over several weeks and interview them about their expectations and experiences. Findings from the study will make it possible to better tailor the design of data-based health applications to the needs of users. This can strengthen acceptance and counteract risks due to non-use or misinterpretation.

Citizen Science Component

With the help of mobile applications and web platforms, users can not only collect and merge their personal health data, but also analyze and interpret it - in other words, they become researchers of their own data. In the future, this could result in promising citizen science approaches for the active participation of patients and citizens in health research and their involvement in the innovative collection of research data. However, these opportunities are also associated with risks: the use of networked health devices in everyday life is rarely carried out according to an

specific, scientific protocol and misinterpretation or (un)knowing falsification of data by users cannot be excluded. The goal of the qualitative field study conducted in Making Sense is therefore to identify and scientifically assess these risks. This risk assessment contributes to a better contextualization and classification of quantitative health data collected by citizens in real-world settings. This will make networked health devices more usable as opportunities for Citizen Science.

Current Status

Status July 2023: We will soon be ready for the field study. So far, the study design and materials have been conceived and extensively piloted, and an ethics vote has been obtained. In addition, we have selected a range of networked health devices from which the study participants will be able to choose at the beginning of the study - in the spirit of realistic everyday use

will put together their personal set. In the coming weeks, we will finalize interview guides, instructions and other study materials before the first study cohort with 5 participants and a duration of 4 weeks will start. Two more cohorts of 5 participants for 4 weeks each will follow by the end of the year.

Further information:
https://www.offis.de/offis/projekt/making-sense.html

https://www.offis.de/anwendungen/gesellschaft/personal-pervasive-computing.html