Accepted Paper:

The Capitalisation of Electronic Patient Records in Data-Driven Economies: Overcoming Privacy Expectations  

Authors:

Paraskevas Vezyridis (The University of Nottingham)
Stephen Timmons

Paper short abstract:

To assetise data from electronic patient records and financialise economic growth, the state and the private sector are developing a new techno-legal framework of shared investment and risk for recipients and commissioners of healthcare so as to overcome privacy concerns.

Paper long abstract:

Big data analytics from electronic patient records aspire to facilitate efficiencies and innovation in healthcare via personalised services, new medical treatments and accountability. However, there are also ethical, legal and social implications around the processing of sensitive personal data. The paper explores the privacy concerns, expectations and implications of the care.data programme by NHS England. It traces the historical development of this national central database that aims to develop complete datasets of patients' journeys (primary care, hospitals, genomics) across the national health system. It uses the contextual integrity framework to illustrate the way technologies and policies are shaping the programme's direction towards new information flows outside direct healthcare. Through an STS lens, it goes a step further to show how, both symbolically and materially, data from these records is gradually transferred to a 'neutral' space ready for transactions. Under a techno-legal framework, where the clinical duty to promote research translates into the societal duty to participate in research, we find a new social contract of shared investment and risk between recipients (uncontested data provision) and commissioners of healthcare (uncontested data sharing). For this, a new public-private partnership is formed where the state, on behalf of the private sector, asserts property rights over these datasets for their assetisation and the financialisation of unsustainable healthcare systems. In the process, privacy is reduced to an individualistic preference while sustainability, governance and economic growth are becoming the de facto social values, restricting discussions about social and ethical implications of such big data initiatives.

Panel T005
Turning Things into Assets