(Un)Controllable control: Public perceptions of blockchain in health care

• In Event: Toward a Critical Health Informatics: Traversing Policy and Practice II - Cases and Explorations

Abstract

Health data management systems are often hierarchical, centralised models with public and private health organisations acting as primary data custodians and gatekeepers on behalf of patients and as intermediaries for third party data users. In the recent years, researchers have begun to explore the use of Distributed Ledger Technologies (DLT), also known as blockchain, in health care. Visions of decentralised forms of personal health data management and mechanisms to create interoperability within disparate health care systems are connected to promises of emancipating patients and giving them back control and possible incentives to share their own data.
In this presentation, we highlight results from a co-design process and focus group research from an interdisciplinary project on blockchain uses in health care. In particular, we will present participants notions of control and power related to the core features of DLT. The results show a deconstruction of libertarian ideas to technically remove intermediary or central authorities by participants in favour of institutionalised control. Further, participants saw individual control as a mix of data self-protection measures and proactive strategies of participating and executing agency in health care systems. They were interested if DLT could enable them to gain greater participatory agency, but also voiced concerns it be used to limit these possibilities, deepen existing inequalities and it is not set up to ensure equitable access to services. Our research shows that social justice considerations need to be taken into account for designing personal health informatics systems for wide-scale adoption.

Authors

• Victoria Neumann, Lancaster University

• Gail Davidge, University of Manchester