The use of health data held and controlled by public healthcare institutions (here forth health data) is vital for developing new healthcare technologies, improving health outcomes across populations, and supporting data industries and innovation. Lack of public trust, however, jeopardises this potential, leading to real costs and missed opportunities. In bioethics, a number of suggestions and recommendations have emerged as to how this seeming dissonance between public expectations and research and innovation ‘reality’ should be resolved in order to engender and maintain public trust. It has been argued, among others, that addressing it requires a focus on trustworthiness, reliability, or more robust regulation.

 

This project moves beyond discussions about how to fix the problem of trust, to research into the underlying drivers of (dis)trust. It begins from the premise that public trust is warranted to public institutions tasked with benefiting the public. Despite attempts to define public benefit with respect to use of health data, the meaning, and application of the term remains unclear. Therefore, this project seeks to investigate, what constitutes public benefit in the context of health data use in the current digitalised era, and its relationship with public trust. It examines what benefits ought to be generated (e.g. economic benefits, epistemic benefits), for whom (e.g. public healthcare systems, patients, industrial sector), how these benefits should be assessed and prioritised (e.g. how should epistemic benefits be weighed against clinical benefits), and their relationship to public trust.

 

To develop a conceptually robust and empirically grounded account of public benefit in the context of health data use and articulate its connection to public trust, this project combines philosophical methods with empirical analysis of comparative case-studies from England and Germany – the countries that invented the two most common publicly-funded healthcare models.
The project has the following objectives:

1. Identify and describe the benefit(s) of health data
2. Analyse existing conceptions of public benefit in the context of health data research and innovation 
3. Examine the nature and role of publicly funded healthcare systems in prioritising and promoting benefits 
4. Construct and critically analyse an account of public benefit in the context of health data research and innovation
5. Examine and evaluate the concept of public trust towards public healthcare institutions that (also) promote non-health related benefits
6. Analyse existing health data governance frameworks and policies and articulate how they could be adapted to promote public benefit and secure public trust.