#SRDD2018 Programme

Type

Presentation

Time

16:00-16:30

Title

Data to the People – The Power of Citizen Science in Healthcare

Speaker

Ernst Hafen

Abstract

Public health and medical research largely depends on the availability of personal data as diverse as genomic, geolocation, nutrition, fitness and medical data. The individual is only agent that is permitted to consent to the aggregation of these different data types. Personalised health research thus depends on the active participation of citizens/patients by collecting and contributing their data to research. For example, via dedicated smartphone apps patients can record sensor data and their wellbeing or side effects associated with new medications of surgical treatments. For such patient reported outcomes to be adopted widely, a new trust promoting framework for data sharing is needed. I will argue that citizen owned non-profit data cooperatives in which users remain in full control over their personal data provide such a framework. I will present results from several successful studies run on the MIDATA platform cooperative including a citizen science hay fever study which recruited over 7000 participants within the first week of launch of the Ally Science app. Since data can be copied citizen-controlled management of these data will not only improve healthcare it also offers the chance to democratise the personal data economy.