Digital media are rapidly changing how citizens view and manage their health. The user-generated content of social media (especially social networking sites like Facebook, YouTube and Twitter) allows citizens to produce their own knowledge, to facilitate self-care and to advocate for changes in health-related policies and practices, in particular, those affecting treatment. While healthcare professionals often welcome greater patient involvement in their own healthcare, many are concerned that using digital media to gain access to treatments that are yet to be proven as safe and effective carries potential risks of harmful outcomes, or can yield little or no patient benefit for considerable outlays.
The key question for this study is: how do patient activists use digital media in their efforts to control the development and availability of treatments in different condition-specific communities? The issue is complicated by a spectrum of patient roles, from highly individualised attitudes at one end, to a tendency to take on a more politicised advocacy on the other. Our goal is to gain a deeper understanding of how different patients use digital media in a bid to influence clinical research, to collect and assess evidence and to access treatments that have yet to be proven as safe and effective and how this digital media use is shaped by sociocultural factors. Insights from this study will inform the response by policy makers, healthcare professionals and activists themselves to this growing phenomenon.