April 12, 2024

Utilizing Citizens’ Data Safely in Research: Lessons from COVID-19 Data Donation Projects

The ongoing advancements in smartphones, smartwatches, and associated applications have enabled individuals to record and store personal health data more efficiently. However, there are concerns regarding the usage of this data, especially in light of the proposed European Health Data Space law for 2022, which suggests sharing depersonalized health and wellness data without explicit consent. In response to these concerns, Professor Stephen Gilbert from EKFZ for Digital Health and Professor Dirk Brockmann from Center Synergy of Systems have outlined potential solutions in an article published in npj Digital Medicine, focusing on the experience gained from data donation projects during the COVID-19 pandemic.

A growing number of people are relying on wellness and health apps to measure, interpret, and store various health parameters such as activity levels, metabolites, electrical signals, blood pressure, and oxygenation. This data not only serves personal interests but also holds significant value for medical research. By analyzing citizen-contributed health data alongside clinical data, researchers can enhance their understanding of diseases, their progression, and early detection. Such data also provides a vital foundation for research, particularly in optimizing predictions using deep learning and other artificial intelligence techniques.

Throughout the COVID-19 pandemic, Germany, the United Kingdom, and the United States launched several data donation projects to collect citizen data. These initiatives highlighted the willingness of citizens to participate and share their data. However, it was crucial that individuals had agency in determining when and which data to share, with the opportunity to withdraw consent or halt participation at any time.

According to Gilbert, co-author of the article, it is neither ethically nor politically acceptable to automatically collect personal data from citizens without their consent, particularly with the introduction of new smart products. In response, the researchers propose the utilization of a trusted and secure external consent platform. This platform would allow users to understand the recipients, purposes, and locations of data sharing activities. Active engagement further increases the likelihood of sustained data sharing. The positive and instructive experiences of researchers with voluntary data donation during the pandemic should now inform the development of long-term solutions.

For the future, the responsible use of personal health data in research necessitates the full awareness and consent of all participants, along with the ability to withdraw their decision at any time. Brockmann, Director of the Center Synergy of Systems at TU Dresden, emphasizes that their work has indicated citizens’ understanding of the societal benefits achieved by volunteering their health and wellness data.

In conclusion, the experiences derived from COVID-19 data donation projects have shed light on how citizens’ data can be securely and ethically utilized for research purposes. By adopting a standardized, scalable, and consent-based approach to data sharing, researchers can effectively leverage citizen-gathered health data to advance medical and scientific knowledge. It is imperative to develop long-term solutions that prioritize individual consent and awareness, thereby ensuring the responsible and beneficial utilization of personal health data for the betterment of society.

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1. Source: Coherent Market Insights, Public sources, Desk research
2. We have leveraged AI tools to mine information and compile it