- Fadhila Mazanderani
- Chancellor's Fellow
- 1.66 Old Surgeons' Hall High School Yards Edinburgh UK EH1 1LZ
- Research Interests
- Social movements, Patient experiences, Public health, Health policy, Sociology of Knowledge, Medical sociology, Social media and internet technologies, Chronic illness, Care ethics
I joined the Science, Technology and Innovation Studies group in September 2013. Prior to coming to the University of Edinburgh I held posts at Durham University, the University of Warwick and the University of Oxford. I hold an MSc from the London School of Economics and Political Science and a DPhil from the University of Oxford. I originally studied at the University of Pretoria, South Africa, and worked as a management consultant in the Media and Telecommunications industry before deciding to pursue further academic study.
My research interests sit at the intersection of Science and Technology Studies (STS), Medical Sociology and Anthropology. I have conducted research on the use of information technology in relation to chronic illness and contemporary healthcare (HIV/AIDS and neurodegenerative disease), expertise and experience, the ethics of care, illness narratives, privacy and the internet. I have a particular interest in the production and mediation of alternative forms of knowledge and ways of knowing in healthcare, and how we might use this to re-think the relationship between knowledge, ethics and aesthetics in medicine and related fields.
I am currently engaged in two core strands of research.
Bodies of Evidence: Digital Technologies, Patient Activism and Contested Therapies
This is a long term study of transnational digitally mediated patient activism in the field of neurology. The key focus of the project is an interrogation of: i) how patients and, to a lesser extent, biomedical researchers, practitioners and policy-makers, use digital technologies in relation to contested theories and treatments and; ii) the effects this use has on patients’ experiences and the wider field of Multiple Sclerosis(MS) research, treatment and care in different national healthcare contexts (the UK, Australia, the USA and Canada). The project tackles and contributes to a number of important themes within science and technology studies (STS) and medical sociology, namely: experience and expertise, and more specifically experience as expertise; the role of digital technologies in medical controversies; patient activism and health social movements.
Improving NHS quality using internet ratings and experiences (INQUIRE)
This project explores the use and effects of online patient feedback and comments on healthcare services in the UK (INQUIRE funded by the NIHR). The work I am directly involved in, which forms part of a wider programme, explores how people affected by a range of chronic and acute health conditions living across the UK have commented on healthcare services through a variety of different online platforms (e.g. blogs, NHS websites, patient feedback services).
- Mazanderani, F., Kelly, J. & Ducey, A. (2017). 'From embodied risk to embodying hope: therapeutic experimentation and experiential information sharing in a contested intervention for Multiple Sclerosis'. BioSocieties.
- Mazanderani, F. & Paparini, S. (2015). 'The stories we tell: Qualitative research interviews, talking technologies and the ‘normalisation’ of life with HIV'. Social Science & Medicine 131: 66-73.
- Mazanderani, F., O’Neill, B. & Powell, J. (2013). ‘People power' or 'pester power'? YouTube as a forum for the generation of evidence and patient advocacy. Patient Education & Counseling 93(3): 420-425.
- Mazanderani, F., Papoutsi, C. & Brown, I. (2013). A reflexive analysis of 'context' in privacy research: two case studies in HIV care. International Journal of Human-Computer Studies 71(12): 1126-1132.
- Mazanderani, F., Locock, L. & Powell, J. (2013). Biographical value: towards the conceptualisation of the ‘commodification’ of illness narratives in contemporary health care. Sociology of Health & Illness 35(6): 891-905.
- Mazanderani, F. (2012). An ethics of intimacy: Online dating, viral-sociality and living with HIV. BioSocieties (7): 393-409.
- Mazanderani, F., Locock, L. & Powell, J. (2012). Being differently the same: the mediation of identity tensions in the sharing of illness experiences. Social Science & Medicine 74(4): 546-553.
- Locock, L., Mazanderani, F. & Powell, J. (2012). Metaphoric language and the articulation of emotions by people affected by motor neurone disease. Chronic Illness 8(3): 201-213.
- Vasalou, A., Gill, A., Mazanderani, F., Papoutsi, C. & Joinson, A. (2011). Privacy dictionary: a new resource for the automated content analysis of privacy. Journal of the American Society for Information Science and Technology 62(11): 2095-2105.
- Lotriet, H., Matthee, M. & Mazanderani, F. (2009). Selective exclusion: the digital divide in the context of indigenous knowledge systems in South Africa. South African Journal of Information Management 11(1): 1-12.
- Mazanderani, F. & Powell, J. (2016). ‘Practices and platforms for sharing experiences of multiple sclerosis – interviews, participant observation and content analysis’, in Examining the role of patients' experiences as a resource for choice and decision-making in health care, NIHR Programme Grants for Applied Research: 4(17).
- Mazanderani, F., Kelly, L. & Powell, J. (2016). ‘How, why and with what effect do people seek out and share health information online? Secondary analysis of the Oxford Health Experiences Group archive,’ in Examining the role of patients' experiences as a resource for choice and decision-making in health care, NIHR Programme Grants for Applied Research: 4(17).
- Mazanderani, F. & Powell, J. (2013). Using the internet as a resource for exploring patients’ experiences. In Understanding and Using Experiences of Health and Illness. Ziebland, S., Calabrese, J., Coulter, A. & Locock, L., Oxford University Press, pp.94-103.
- Mazanderani, F. & Anderson, J. (2011). Internet use as a means of learning about HIV: a case study on the sharing and receiving of treatment information. In Education and HIV/AIDS. Briggs, N. Continuum, pp.130-144.
- Mazanderani, F. & Brown, I. (2010). Privacy as practice: exploring the relational and spatial dynamics of HIV-related information seeking. In Computers, Privacy and Data Protection: an Element of Choice. Gutwirth, S., Poullet, Y., De Hert, P. & Leenes, R. Springer, pp. 251-268.
- Mazanderani, F. (2014). The patient's view: perspectives from neurology and the 'new' genetics. Science as Culture 23(1): 135-144.
- Mazanderani, F. (2013). Therapeutic sovereignty: HIV/AIDS and the politics of survival in West Africa. Science as Culture 22(2): 256-260.
Topics interested in supervising
I welcome inquiries from prospective students who are interested in applying theoretical and methodological approaches from Science and Technology Studies to different contexts and case studies in Medicine and Healthcare. In particular: 1) The epistemological, political and ethical consequences of the introduction of internet and other technologies in medicine and the life-sciences; 2) Alternative forms of knowledge in medicine and healthcare, including patients' lived experiences, emotions and sensory perception; 3) Contested knowledge and controversial medical theories and treatments. In addition, I would be interested in hearing from students who would like to conduct research in relation to the following health conditions and medical specialisms: HIV and sexual health; neurological conditions (e.g. Multiple Sclerosis; Parkinson's disease); Medically unexplained or unrecognized conditions (e.g. CFS/ME, electrosensitivity); allergies and auto-immune conditions.
If you are interested in being supervised by Fadhila Mazanderani, please see the links below for more information: