Better understanding of the ethical, social and political underpinnings of mobile health technologies
With EU funding, the HEALTH ON THE MOVE (Health on the move: Exploring the ethical, social, and political underpinnings of portable devices for healthcare and lifestyle) project provided a systematic and empirically grounded ethical assessment of mHTs, and their use in and out of the clinic. Project partners began by identifying key technologies that attract attention from public health debates, regulatory frameworks and relevant stakeholders. Through 25 interviews and analyses, they examined the Patient Access app that enables patients to book appointments, manage prescriptions, and access their general practitioners’ notes and blood tests. Researchers contributed to the activities of the European Commission Working Group aimed at developing guidelines for the health app assessment. They also participated in the World Medical Association public consultation on ethical considerations for health databases and biobanks. They set up the Data and IT in Health and Medicine Lab, an international research group that explores the social, ethical and political dimensions of IT, data and health. This was followed up with the development of a university-wide network for the interdisciplinary study of digital health. Overall, findings show that mHTs challenge existing regulatory schemes in three areas: the definition of health data; the distinction between medical device and consumer product; and current systems to assess liability. For these reasons, the risk-based approach falls short as a regulatory tool for health apps. Such apps and self-tracking devices create ethical and practical challenges for biomedical research governance that require rethinking norms, categories and nomenclatures ruling medical research. In addition, an analysis of patients who access their medical records via mHTs reveals that there is a gap between the promise of empowerment and situated practices of a patient accessing such records. HEALTH ON THE MOVE laid the groundwork for setting an agenda for the responsible development and integration of mHTs in healthcare systems.
Keywords
Mobile health technologies, healthcare, HEALTH ON THE MOVE, portable devices, health app