Oral Presentation Australian Diabetes Society and the Australian Diabetes Educators Association Annual Scientific Meeting 2014

Self tracking, social networking and the rise of citizen science in health  (#27)

Kathleen Gray 1
  1. The University of Melbourne, Parkville, VIC, Australia

New technologies for data collection and data sharing are enabling people with chronic illness to become more active not only in personal health management but also in population health initiatives.  The array of health self-monitoring devices available to consumers is widening rapidly, supporting choice about what sorts of health data you want to track, your preferences for using different wearable or portable designs, and how much you want to invest in equipment and in Internet connectivity. Our research has compared the key features and functions of typical devices on the Australian market, and has analysed the personal data management practices reported by device users worldwide. At the same time, the number and nature of online social network sites catering to people with chronic health conditions has grown enormously, enabling widespread sharing of not simply information (and misinformation!) but also personal experiences of illness and treatment, and personal health data. Our research has studied the health literacy effects and health outcomes reported by social media users and the ways that individuals may tailor their social media use to their personal needs.  Self-tracking and social media together have given rise to new social movements, such as the Society for Participatory Medicine and the Quantified Self, through which people are organising to advocate collectively for research on the health conditions of greatest concern to them, and to advance this research actively. So-called citizen scientists are crowdsourcing data sets to explore their research questions – data in many cases generated by self-tracking devices and direct-to-consumer online testing services – as well as the analytical expertise and tools to analyse them, and the funding to defray costs and disseminate findings. Our research is investigating how, in using new technologies this way in health, they are raising the bar for research collaboration, treatment planning and service provision in our health systems.