Introduction:

The workshop will explore the diverse socio-ethical and regulatory implications of citizens' growing use of digital media to connect to healthcare. It will bring together scholars with expertise in bioethics, sociology, anthropology, biomedical science and law to consider how digital technologies are impacting on citizens' healthcare views and practices and providers' practices as well as the adequacy of current perspectives and regulatory responses in this sphere. By bringing together diverse expertise, the workshop will offer fresh insights into this topic and lead to outputs that will help inform future socio-ethical thinking and regulatory decision-making in regards to citizens' use of digital media.

Digital media are rapidly changing citizens’ engagement with healthcare. No longer constrained by geography and national borders, citizens are able to use the internet and social media on a 24/7 basis to establish links with remote others, including providers, to manage their own health, to gain access to treatments unavailable to them where they live, and to shape research priorities. Digital media also offer new opportunities for providers of healthcare, by enabling them to deliver their services remotely (tele-health), and to advertise treatments and care directly to consumers via the internet (e.g. medical tourism). This workshop will bring together established and emerging scholars in ethics, sociology, anthropology, biomedicine and law, to explore the diverse socio-ethical and regulatory implications of citizens’ growing use of digital media to engage with healthcare and to propose new approaches to responding to this digitalization.

The workshop responds to what may be described as an emergent ‘bio-digital citizenship’, whereby citizens assume an active role in the project of advancing health and self-care. Individuals are routinely using the internet to access health information, to gain guidance in regard to tests and treatments, and to learn how others manage their health (Fox 2011; Weymann, Härter & Dirmaier 2014). The digitalization of health and healthcare is giving rise to a novel array of social, ethical and regulatory issues that have barely begun to be explored. These include: the impacts of the routine use of digital technologies on citizens’ beliefs and expectations about health and care; the potential exploitation of those who invest their trust in remote others; the ability of lay citizens to assess the veracity of information derived via the web and social media; how relations of trust are being reconfigured in an online environment; and the effectiveness of authorities’ current approaches to regulating treatments and practices that are advertised directly to consumers via the internet.

This three-day workshop will be structured around three inter-related sets of activities. The first (Day 1) will involve mapping the range of socio-ethical and regulatory issues associated with the digitalization of health. These will include, for example, how search engine optimization is shaping the delivery of online health and medical information; the implications of patient activism for the development of health research agendas (e.g. ‘patient-driven’ research); the use of the rhetoric of empowerment to legitimate the introduction of new digital media; and the challenges faced by citizens when assessing the ‘trustworthiness’ of online information, including online ‘direct-to-consumer’ advertising. The second set of activities (Day 2) will involve identifying how these issues may be understood and resolved from the perspectives of different disciplines. The impacts of the digitalization of health are complex and ambiguous, and cannot be adequately grasped from the standpoint of single disciplines. Questions that will be considered include: the implications of the growing commodification of the body and of health (Turner 2011; Connell 2013) associated with, for example, citizens’ growing access to stem cell treatments, transplant surgery, fertility treatment and surrogacy (Lozanski 2015); the adequacy of current systems of accreditation, and of the evidence base for treatments and practices; and the potential for malpractice and disease transference in the case of medical tourists who are returning to their home countries (Snyder et al. 2013; Cohen 2014; Ormond 2015; Stan 2015). The third set of activities (Day 3) will build on the previous two days' activities, by proposing future avenues of socio-ethical research and potential regulatory responses. There is an urgent need to better understand the current and potential future impacts of digitalization in health and healthcare, so that citizens may reap the benefits of digital innovations while being protected from potential harms. Workshop participants will consider the strengths and limitations of current regulatory responses to digitalization in health and healthcare, in relation to, for example, addressing health and safety and ethical issues (Crooks & Snyder 2010); offering legal protection to those who pursue treatments outside their home country (Whittaker, Manderson & Cartwright 2010); and moderating or ameliorating the adverse effects on local healthcare systems (Snyder et al. 2013).