Background

New legal frameworks, such as the European Health Data Space, are currently being implemented across the European Union (EU), making it easier to use and exchange patient electronic health records. Patient data can be used for individual healthcare, which is known as primary use, and for other purposes such as in research and policy-making, which is referred to as secondary use. This study explored the different perspectives of a wide range of people on the role of patients in how their health data is used for primary and secondary purposes in Ireland.

Research

The study involved focus group discussions with academics and researchers; data, ethics and privacy experts; healthcare professionals; patients and public; and industry representatives. The findings suggested strong support for increased patient involvement in decisions around how their data is used. However, views were inconsistent around who should have control over their data, the level of Patient and Public Involvement (PPI), and how to incorporate PPI in research.

Potential Impact

This study emphasises the importance of increased patient involvement to support successful implementation of new health information systems and policies in Ireland and the EU. The findings can help to support the development of national health policy and standards for health information in Ireland, and the development of guidance to assist organisations in implementing these standards.