ABSTRACT
The role of digital media use in participatory practices has become a topical subject across social movement studies and media and communication research (see Chapter 2). However, the relationship between digital media and participatory cultures of health and illness, despite the now widespread digital practices within health advocacy and the impact of these practices on health policy making, services and scientific research, has so far remained underexplored. By drawing initial connections between the literature on digital media, participation and citizenship covered in Chapter 2 and the work on health advocacy and activism discussed in Chapter 3, this chapter discusses the affordances of digital media and communication for patient advocacy organisations. It does so by presenting an empirical piece of research focused on rare disease patient organisations. The initial sections provide insight into the role of organisation websites in defining the identity and the remit of action of rare disease patient advocacy. The second part of the chapter discusses how digital mechanisms (i.e., technological elements embedded in or connected to websites) enhance health knowledge co-production, individualised means of public engagement and alternative informational pathways, ultimately enhancing the emergence of health-centred networked publics engaging with participatory practices of health and illness.
