Wednesday, April 12 2017, 15:30-17:00, in the Attic (Grote Gracht 80-82, Maastricht)
The power of access in the age of digital healthcare – Clashing normativities in discoursive and material practices in the Patient Online case
In his last book, The patient will see you now, Eric Topol argues that digital platforms, by enabling citizens and patients to access health-related information, have the potential to invert the power relationship between patients and doctors. Less radically, proponents of patient online access to medical records in NHS England expect that access to tests, GP notes, hospital consultations will bring patients in control of their health and care and produce knowledge and awareness for healthy living choices and prevent disease. In this context, GP surgeries in England are required to enable patients to digitally access a summary of their medical records and full access is expected by 2018. According to some proponents of patients’ access to EHRs, clinicians’ concerns about potential negative implications are grounded in a form of paternalism that protects clinicians’ authority.
The democratizing and empowering potential of digital technologies is a core argument for their proponents, but what does “empowerment” mean in these discoursive and material practices? Building on an exploratory study conducted in a GP surgery in Northern England, this paper reflects on the meanings of “empowerment” discourses surrounding digital health. By using patients’ narratives and document analysis, it shows how (and discusses why) the organisational, procedural, and technological infrastructures are at odds with the promises of empowering patients through record access.
Dr Federica Lucivero is a Marie Curie Fellow and Deputy Director of the MA Bioethics and Society at the Global Health & Social Medicine department at King’s College London. In the context of her project Health on the Move, she has conducted research on the ethical social and political aspects of mobile health technologies. Her expertise and interest span across different areas and disciplines: ethics and social studies of science and technology, governance of innovation, philosophy of science and technology. She cofounded the Data and IT in Health and Medicine Lab and is KCL representative in the Working Group on mHealth guidelines at the European Commission.