Dr Rebekah Eden and her team from the Queensland Digital Health Centre (QDHeC) have been awarded almost $20,000 through the UQ HERA Collaborate grant scheme to tackle one of the most pressing challenges in modern healthcare: ensuring public values guide how digital health data is governed and used.
As healthcare systems worldwide transform into 'learning' health systems powered by advanced analytics and artificial intelligence, a fundamental question has emerged: who decides how patient data should be used, and based on what principles?
While healthcare organisations globally have invested billions of dollars in digital health transformation, Dr Eden's research addresses the concerning reality that current data governance approaches often prioritise administrative efficiency or private sector interests over genuine public values.
“The consequences of this approach have been stark,” Dr Eden said.
“The National Health System in the United Kingdom, for instance, shared health data from 1.6 million patients with private enterprises without public consultation, severely undermining trust and compromising future data-sharing initiatives.
“Examples like this highlight how failing to consider public perspectives can damage the very foundation that learning health systems depend upon - community trust and engagement.”
Over the next 12 months, Dr Eden's team will develop innovative research tools to capture what the public truly values when it comes to the secondary use of their health data. The project will create a robust survey instrument designed to reveal both the values people readily express and those revealed through their actual decisions and behaviours regarding health data use.
This research builds on earlier qualitative work supported by a UQ Business, Economics and Law School Connect Grant and aims to establish a methodology that can be used across different healthcare contexts to ensure public values are meaningfully incorporated into data governance decisions.
“We will then triangulate the findings of this study with existing qualitative data to provide clear guidance on what public values must be considered when leveraging health data for learning health systems,” she said.
As healthcare becomes increasingly data-driven, Dr Eden's research represents a crucial step toward ensuring that technological advancement serves not just efficiency goals, but the broader public interest and community values that should guide public sector healthcare decision-making.
