New media and my personal experience of research
Dr Shibley Rahman, BPP Law School
Centre for Ageing and Biographical Studies (CABS) and Centre for Policy on Ageing (CPA) OU Seminar
30 October 2015
How research into wellbeing in dementia is conducted and the results are successfully shared have changed hugely since I was a doctoral student in Cambridge in cognitive neurology in 1997-2000.
There are several key issues are known to be particularly relevant to older people, affecting health and wellbeing, such as isolation, loneliness and living beyond a diagnosis of dementia. Social media platforms such as Facebook and Twitter have been successful in breaking down traditional power hierarchies between professionals and members of the public, and opening up channels of communication to allow collaboration. This now provides a real opportunity for people with dementia, carers and paid careworkers to lead in policy in dementia service provision and research.
The social media, in my opinion, has undoubtedly made campaigning much easier too in medical and social care issues. Recent striking successes include the #take10 campaign and the ‘ice bucket challenge’. Blogs by people with dementia living with dementia, for example those by Wendy Mitchell and Kate Swaffer, have helped to break down stigma, and to explain to the world at large their lived experiences across geographical boundaries. The use of social media platforms ultimately could lead to a powerful transformational change in the perception of dementia diagnosis, care and support in England.
There are globally estimated to be 316M monthly users of Twitter, providing genuine scope for much knowledge sharing. Many researchers have had favourable experiences with Twitter, and I am no exception. I still use MEDLINE to look up peer-reviewed published papers, but I have become much more reliant on repositories, ResearchGate and “open source” papers. The current evidence perhaps overall suggests that promoting research on the social media has little impact, but I have found from my own personal experience that blogging and Twitter are great ways to starting a conversation between my work, people’s experiences and other people’s research. There are a number of advantages, described well elsewhere, such as providing real-time feedback and establishing a forum for both self and group reflection (Forgie, Duff and Ross, 2013).
I have used “SurveyMonkey” to conduct openly published questionnaires, but all medical researchers should be vigilant about ethics issues in conducting internet-based research (Shepherd et al., 2015). In the last few years, I have now published two very well received books on living better with dementia, and presented talks and posters at a number of international conferences based on my surveys on contemporaneous issues in dementia policy. I see my research as totally indistinguishable from advocacy for improved rights for people with dementia. This means I maintain a keen interest in recruitment of the general public into research with dementia and also in assessments of impact of all research conducted into dementia.
Forgie SE, Duff JP, Ross S. Twelve tips for using Twitter as a learning tool in medical education. Med Teach. 2013;35(1):8-14. doi: 10.3109/0142159X.2012.746448. Epub 2012 Dec 21.
Shepherd A, Sanders C, Doyle M, Shaw J. Using social media for support and feedback by mental health service users: thematic analysis of a twitter conversation. BMC Psychiatry. 2015 Feb 19;15:29. doi: 10.1186/s12888-015-0408-y.