Challenge 3

Digital health care governance and privacy

Digital technologies have profoundly changed social, political, and economic practices. Their impact and effects are captured by different levels and sectors of society. Many scholars agree that many of the categories, as well as our legal and regulatory instruments that stem from the paper age, do not capture digital practices adequately (Dunleavy et al 2006; Metcalf and Crawford 2016; Taylor 2012; Taylor et al 2016). Due to the lack of robust ethical and legal frameworks, in many societal domains we see people grappling with ethical dilemmas of digitisation on an ad-hoc basis, acting on their direct concerns. In the health context this problem has long been part of daily decision making in professional training, research, and in connection with clinical procedures and public health. In the context of human work, there is a widespread concern that digital technologies increasingly substitute human skill and displace certain kinds of labour, posing new ethical, managerial and policy challenges (Prainsack 2017).

The healthcare sector illustrates all of these concerns. Digital technologies have had a deep impact on the roles and expectations of patients and clinicians (Topol 2019). The term “digital health” (e.g. Meskó 2017), which refers to “the cultural transformation of how disruptive technologies that provide digital and objective data accessible to both caregivers and patients leads to an equal level doctor-patient relationship with shared decision-making and the democratization of care” (Meskó 2017), is seen both as a way to make healthcare more effective, cheaper, and more patient-centred, and as a danger to human expertise and human interaction in the clinic and beyond (Topol 2015; Lupton 2013; 2014; Wachter 2015).

Digital health entails a number of digital practices including electronic healthcare records (EHRs), mobile applications, predictive, diagnostic and treatment of illnesses based on big data, use of cloud services, systems for interoperability of health data, scientific research in health, patient records, telemedicine, health apps and health portals. What makes the ethical, economic and political analysis of digital health so difficult is that the very same practices that enhance patient empowerment and shared decision making can give rise to surveillance medicine and exacerbate existing inequities (for example, when only those patients that participate in digital monitoring receive high quality healthcare). The European Union has embraced the paradigm of digital health and provides financial support for research and infrastructures in this sector. These developments result in new configurations of the very phenomena and practices that need to be governed. This, in turn, merits a fresh look at concepts such as privacy, but also openness, solidarity, and consent (see also Skovgaard et al 2019; Wadmann and Hoeyer 2018).

Doctoral project 3

Host Department: Innovation and Digitalisation in Law @ Faculty of Law

Supervision: Nikolaus Forgó & Barbara Prainsack

Pre-doc: Elisabeth Steindl

The research question leading the third doctoral project will focus on the extent to which a balance can be struck between the digital health, governability and existing legal frameworks within the European Union. Also in the domain of digital health, current developments cannot be understood in isolation from the political economy within which they take place, including old and new financing and pricing models. At the centre of this will be a doctoral project aiming to create a model for a balance between digital health, governability and existing regulation within the European Union (“elements”). Step 1: identifying and exploring case studies for the examination of the interplay of economic (incl. financing), legal, and political factors shaping digital health policies and practices in Europe (social science and legal expertise). Step 2: identify and research existing European Union legal frameworks (legal expertise). Step 3: on the basis of the analysis of the case studies, identify “best practices” and new models of governance for digital health, including: How do existing instruments of governance need to be revised to address the specific challenges of digital practices in healthcare? Are there new rights and needs of people that need to be met and protected? Through which instruments can and should they be protected?