Web forums and the ‘core self’ of mental illness experience
The House of Commons Health Committee’s 2014 report highlighted the need for mental health services to keep up with the challenges brought by the Internet and social media. These include the stresses associated with a 24/7 digital culture; the proliferation of online bullying; and the advent of online forums or communities that promote resistance to mainstream health discourses (e.g. ‘pro-anorexia’ forums).
Cited in the report, Tavistock and Portman NHS Foundation Trust describe that “what we are witnessing in terms of young people’s online lives represents a fundamental change in human behaviour”, and therefore “enquiry about digital lives needs to become integrated into assessments, including risk assessments”. The charity Young Minds also argues that health professionals are often out of touch, even “intimidated”, by the technologies and platforms young people are using.
The report provides a number of welcome recommendations for improving e-safety, such as providing ways to report harmful image-sharing and cyberbullying. Yet we must also acknowledge the significant opportunities that web-platforms and social media provide for policy-makers. With concerns that mental health services are “operating in a fog”, the Government’s recent commitment to improve prevalence and outcomes data could make full use of the unprecedented level of insight that digital activity allows into emerging health trends.
It is thought that as many as 75 per cent of children and young people experiencing mental health problems do not access any treatment, and the figure is the same for adults experiencing anxiety and depression. With demand for services so high, and with ease of access to the Internet away from a potentially uncomfortable clinical setting, it is no wonder that we have seen an explosion in the use of health forums as spaces where users seek information and/or support. As Josh Smith’s recent Demos blog suggests, not only do online forums provide researchers with a massive, largely untapped qualitative data-source, but the data itself provides incredibly rich and disinhibited representation of the illness experience.
Health researchers are starting to see the benefits and challenges of this type of data. Rodham and Gavin refer to the online persona in health forums as the “core-self”, whereby the perceived anonymity of cyberspace allows the sharing of “normally withheld, or even pre-conscious facets” of the illness. Forums allow participants to raise health concerns as they experience them in the context of their own lives; a record of how participants “do” their illness, rather than how they “see” or reconstruct it in the often contrived setting of a research interview. Compared to conventional interviews, forum data are also both relatively accessible and inexpensive to collect.
While the potential is clear, the ethical considerations of using this type of data have to be addressed very carefully. These include protecting highly vulnerable participants from harm, and acknowledging that while forums may be in the ‘public’ domain, the expectation of privacy may be very high.
Demos has joined with the King’s Fund in a year-long project to investigate how digital data collection can transform health service delivery. Following ethical approval from the University of Sussex, a pilot study will use web-crawling and Natural Language Processing to collect and make sense of the vast amounts of available information in public mental health forums. With digital culture an increasingly central part of illness experiences, activity in forums could provide innovative insights into how we understand and address the widespread challenge of mental health.