Citizen data sovereignty is key to wearables and wellness data reuse for the common good

Abstract

Smartphones, smartwatches, linked wearables, and associated wellness apps have had rapid uptake. These tools become ever ‘smarter’ in sensing intimate aspects of our surroundings and physiology over time, including activity, metabolites, electrical signals, blood pressure and oxygenation. Proposed EU law stipulates the ‘involuntary donation’ of depersonalized health and wellness data. There has been pushback against the ever-increasing gathering and sharing of wellness data in this context, increasing with every app purchased or updated. Is the potential of this data now lost to research? Consent-led COVID-19 data donation projects signpost a participative, standardized, and scalable approach to data sharing.

The dichotomy of diagnostics: exploring the value for consumers, clinicians and care pathways

“…This paradigm shift may also have broader value and power through keeping individuals ‘well’ through primary prevention and delaying morbidity. However, as recently outlined, with great power ‘comes great responsibility’, and the unforeseen impacts of the perceived positive quantified self also need to be evaluated, including the evidence base for monitoring, and how data will be gathered, used, and re-used 12 . This increasingly is blurring the boundaries of diagnostics and consumer health 12 , 13 (Fig.…”