Monday 24 August, 2.00 p.m. – 4.00 p.m.,
A key area where citizens are engaging in collective knowledge production and sharing is in health and medicine. One the one hand, sufferers of conditions, particularly long term chronic conditions are taking it in to their own hands to explore and test treatments; On the other, data is being collected from patients, medical professionals, volunteers and even Google Searches to inform medical research ,police, and public health. Examples include services such as Patients Like Me, “CrowdMed“, Opensource Cancer, Shift MS, Google Flu and many others, from the amateur to the highly professional.
Experimenting with experience: patients as researchers, a case study in the use of social media by people with Multiple Sclerosis
Science, Technology & Innovation Studies, University of Edinburgh
Over the last decade there has been a dramatic surge in the use of digital technologies by people affected by different health conditions and concerns, with patients increasingly using technologies and platforms to conduct their own research. Through a case study on the use of social media by people with Multiple Sclerosis (MS) – a neurological condition that typically affects young adults – this presentation will focus on one particular form that this research takes: the documentation, monitoring, sharing and aggregation of people’s experiences of, sometimes controversial, therapeutic experimentation. I will trace out some of the ways patients turn their experiences of living with MS into experiments in living with the disease (drawing here on Noortje Marres’ work on sustainable living experiments). The patients’ experimental practices and the ways these are communicated online do not simply document people’s experiences of MS. For those engaged in these activities, they alter the very experience of what it means to live with the condition. They turn the patient from a ‘docile’ data ‘object’ into an active, at times activist, data ‘subject-object’. Moreover, although highly individualised and often extremely personal, the online documentation of these ‘experiments in living with’ often form part of wider, collective practices of data aggregation in which individual patients and patient groups collect and synthesise the results of these experiments, generating new forms of, usually contested, ‘experiential evidence’. In the presentation I will focus, firstly, on providing an overview of these online activities and of patients’ responses to them. Secondly, I will discuss some of the consequences these emergent forms of self-experimentation and online data aggregation have for understandings of what counts as ‘valid’ evidence in medicine
Fadhila Mazanderani is a Chancellor’s Fellow in Science, Technology and Innovation Studies at the University of Edinburgh. Her research focuses on the use of digital technologies in healthcare and biomedical research, in relation to which she has a particular interest in people’s experiences of chronic illness, care ethics and patient knowledge.
Claudia Pagliari is Senior Lecturer in Experimenting with experience – August 2015Primary Care at the University of Edinburgh. Her research interests focus on the exploration and evaluation of eHealth interventions, including organisational and social influences on implementation, and clinical and psychosocial impacts. She is also interested in systematic review and policy analysis of eHealth risks and benefits, and in the evaluation of complex interventions.