The Social Contract for Health and Wellness Data Sharing Needs a Trusted Standardized Consent

Abstract

The rise of health and wellness applications has led to a new category of citizen-generated health data, which are collected through sensors and user inputs. As more parameters are measured over longer time periods, these data will gradually become more important for disease prediction, care, and research than classical clinic-generated health data. Policymakers now recognize the potential of both data types in initiatives such as the European Health Data Space, which aims to enable data sharing for patient care and research at scale. Although it could be argued that clinic-generated data come from public-funded health systems and should therefore be sharable, after depersonalization, for public service, this argument extends poorly to data from wearables and applications. We propose a new approach for standardized health consent, both broad and dynamic, to overcome consent fatigue and engage citizens in data sharing.