The NSW Citizens’ Jury on Health Data Sharing

Opportunity

NSW Health operates the public health system in NSW, including public hospitals and community health centres. NSW Health creates, collects and manages large amounts of data from patients when they get care in the health system. NSW Health asked researchers from the University of Wollongong to help them understand what the community thinks is acceptable when sharing data outside NSW Health for research and innovation purposes, to improve future treatment and health outcomes for people in NSW.

There are potential benefits and risks in this kind of data sharing, and NSW Health wanted to know what the people of NSW think is acceptable when sharing data for research and innovation. Health data being considered in this project does not include personal information such as names, addresses or financial information.

Project Objectives

The broad aim of the project was to answer this important question: NSW Health shares health data with other organisations for research and innovation. How should this be done?

This project set out to produce advice for NSW Health to inform the implementation of the NSW Health Research and Innovation Strategy 2025- 2030 and the NSW Health Data and Analytics Strategy, by:

1. Bringing together a diverse citizens’ jury of NSW residents through an independent and transparent process that is designed to give people a say in policies that affect them;
2. Supporting the jury to learn about data-sharing and deliberate together on the conditions required for trustworthy sharing and use of NSW Health data;
3. Supporting the jury to agree on recommendations that will be considered in future NSW Health policy planning on how patient health data is used and shared; and
4. Sharing the findings of the jury. NSW Health will then share its response to the recommendations.

For more information on the project, visit the University of Wollongong webpage for the NSW Data Sharing Jury.