This post is a response to the challenge set by Victoria Betton to write a post in advance of the event “People Driven Digital Health” which takes place in Leeds on 13th and 14th May. The event which Victoria has organised promises to be great partly because of the focus but perhaps also because of the format which is an “unconference” – rather than the traditional form of several speakers relaying their thoughts or research with a few questions there will be ” lightning” talks to stimulate much bigger discussion. Also, the event is bringing together members of the public with digital innovators, healthcare providers and academics to discuss how digital health can be driven by and for peoples’ needs.
I am a sociologist of health so my interest comes from this angle in academic and practical terms. Perhaps what I am most interested in the ways in which digital technologies are shaping (and reshaping) health and communities and what potential this might have for enabling broader social change.
A significant amount of the sociological work on digital health so far has focused on the impact of digital technology on identity and sense of self. How does the use of digital health technologies make people feel about themselves and others? Some social scientists have warned of the potential for new pressures and inequalities to be placed on individuals.
For instance, Jennifer Whitson has suggested that the kinds of quantification which are enabled through digital health tracking are often “gamified” which is guided by a narrative of constant progress in which achievements are never good enough. Also, Deborah Lupton (sorry for paywall) has suggested that so far digital public health conducted in a neo-liberal context has often focused on individuals as ‘atomized actors’ and underplayed the role of social determinants of health.
Sociological work has shown the importance of social networks (not necessarily the online kind) for health and in particular for tackling health inequalities. For instance (sorry paywall again), health (and significantly peoples’ perceptions of their own health) tend to be better when they have strong connections with lots of other people. This is partly because they are more likely to be able to get access to formal and informal health advice and assistance.
We might expect that digital technologies have helped people to gain better access to these kinds of networks. While I am sure for many people this is true but for some they may have brought more isolation as Maggie Mort has shown in her analysis of ‘telehealth’ and ‘telecare’. Systems which have been intended to support older people to live independently in their homes (such as fall monitors) have sometimes replaced face-to-face interactions. The care which previously took place between individuals has not been maintained when distributed through a digital network. Although this does not mean that technologies cannot be used to help the delivery of care we cannot assume they will directly replace existing caring relationships with nothing lost (or gained).
The potential for new forms of open data in health have created new possibilities with groups such as Dr Foster and Open Humans offering the chance for individuals to join together to share their data outside the confines of traditional medical research. The hope is that this will provide more and better data to produce new insights and better solutions. But as Jonathan Gray has shown openness and transparency can themselves be used in different ways by powerful groups and I would be cautious of existing hierarchies being reasserted.
Although some interesting sociological work in digital health has already been conducted I feel there is potential to take a stronger lead from people engaged with these issues on the ground in order to better understand the real potential. I wonder what impacts digital health technologies are having on existing communities of health and how they are helping to construct new ones. Might a more “people drive” approach help to deal with some of the potential problems with digital health highlighted by sociologists and others? It will be great to hear more about what work is being done in digital health and to think about how sociology might play a part in understanding and developing this.