Mixed Signals: Distinguishing between trustworthy behaviour and trustworthy signalling in health data sharing practice
Paige Fitzsimmons1, University of Oxford Oxford 1University of Oxford, Oxford UK
Abstract
With the emergence of machine learning and artificial intelligence technologies, the use of patient data is a reality of healthcare innovation today. In the UK, calls for public trust in health data-sharing practices are increasingly heard, with much emphasis being placed on the need for trust in institutions which stand to profit financially from data access. Given the way in which healthcare research has become integrally linked with wealth creation, establishing trustworthy health data access when commercial interests are involved is crucial. However, given the performative nature of words like trust and trustworthiness, it is important to clearly define what is meant when using them in context.
This project uses empirical bioethics to make this distinction between trustworthy practice and trustworthy signals. Using case study examples, this presentation will work through key conceptual elements of trustworthiness in health data-sharing alongside findings from empirical data collected. This exercise will identify the substantive nature of demonstrated trustworthiness in an effort to determine what contributes to genuine trustworthiness, rather than that which merely signals trustworthiness in this context. Unpacking this difference will help to define what is needed from institutions accessing health data as we work toward building public trust in a data-driven future.
Biography
Paige is a bioethicist with more than 5 years of experience working in both industry and academic settings. She is currently pursuing a DPhil in Population Health focusing on the ethics of health data use, and more specifically how those with commercial interests in health data access may demonstrate genuine trustworthiness in practice. She holds a BSc in Biology from the University of British Columbia and an MA in Bioethics & Society from King’s College London. She is currently the Associate Director of the Center for Informed Consent Integrity at the GE2P2 Global Foundation. Paige’s interest areas include access to medicines, informed consent, data ethics and public trust.