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SKAPE Meeting : Kerri Cassidy (CCSVI Australia) and Fadhila Mazanderani (University of Edinburgh) Digital technologies and patient participation in research, policy and practice: An (auto)biographical perspective

Title
SKAPE Meeting : Kerri Cassidy (CCSVI Australia) and Fadhila Mazanderani (University of Edinburgh) Digital technologies and patient participation in research, policy and practice: An (auto)biographical perspective
Speaker(s)
Hosted by: Skape # UoE
Hosted by
Introduced by
Date and Time
10th May 2017 12:00 - 10th May 2017 13:00
Location
Conference Room 2.15, Chrystal Macmillan Building
URL
http://www.skape.ed.ac.uk/research/meetings/2016_2017/skape_meeting_kerri_cassidy_ccsvi_australia_and_fadhila_mazanderani_university_of_edinburgh_digital_technologies_and_patient_participation_in_research,_policy_and_practice_an_autobiographical_perspective

Abstract

Patient and public involvement (PPI) has become a standard part of biomedical and health research. Typically, PPI activities are formalised professionally approved modes of engagement aimed at including patients as members, rather than subjects, of the research team. However, people affected by different health conditions often become involved in, or influence research through, more unorthodox methods – for instance, by what Callon and Rabeharisoa have termed ‘research in the wild’. Digital technologies have greatly facilitated patients’ ability to conduct such ‘research in the wild’, enabling them to access, debate, contest and produce different forms of knowledge. In the first half of this seminar, Kerri Cassidy – a patient activist living with Multiple Sclerosis (MS) who has campaigned for further research into the vascular dimensions of the disease – will talk about her experiences of using digital technologies, highlighting some of the key effects that her and other patients’ use of these technologies has had on the field of MS research, policy and practice in her home country of Australia and beyond.

Activities such as Kerri’s prompt questions about the nature of patient involvement in biomedical research and policy-making, and especially about the mediatory role that digital technologies (discussion forums, Facebook sites, YouTube videos, or blogs) play in this – questions that are clearly of interest to patients, health professionals and social scientists. However, Kerri’s work also prompts questions about the potentialities of ‘patient involvement’ in social science research, especially research focused on digital technologies, patient activism and health social movements. The second half of this seminar will address the opportunities, challenges and limitations of the ‘co-production of knowledge’ between a social scientist and a patient activist in this context, with a focus on epistemological, methodological and ethical issues.  In this latter part of the presentation, Kerry Cassidy and Fadhila Mazanderani will together reflect on the question of PPI in health-related social science research by discussing their (still nascent) experiment in collaborating on the topic of patient activism in relation to the controversial case of chronic cerebrospinal venous insufficiency (CCSVI).