Your data is gold – Data donation for better healthcare?

Abstract

Today, medical data such as diagnoses, procedures, imaging reports and laboratory tests, are not only collected in context of primary research and clinical studies. In addition, citizens are tracking their daily steps, food intake, sport exercises, and disease symptoms via mobile phones and wearable devices. In this context, the topic of “data donation” is drawing increased attention in science, politics, ethics and practice. This paper provides insights into the status quo of personal data donation in Germany and from a global perspective. As this topic requires a consideration of several perspectives, potential benefits and related, multifaceted challenges for citizens, patients and researchers are discussed. This includes aspects such as data quality & accessibility, privacy and ethical considerations.