Home•Our Research•Publications•I don’t mind my information going to the Moon, but I don’t want any letters from Mars: a qualitative exploration of the challenges with secondary use of health data in Ireland

I don’t mind my information going to the Moon, but I don’t want any letters from Mars: a qualitative exploration of the challenges with secondary use of health data in Ireland

Thematic Area:
Digital Health
Research Focus:
Health Data Systems
Collaborators:
Academic
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Background

Secondary use of health data can be defined as re-use of data for purposes beyond personal care, such as research, innovation and policy-making. Secondary use of health data is relevant because it can lead to better healthcare experiences and patient outcomes, and new knowledge about diseases and treatments.

Research

This study explored knowledge and perspectives of key stakeholders about secondary use of health data in Ireland, with a specific focus on the challenges in how Irish health data is accessed, used, shared and stored. The main challenges were related to (1) data collection, access and linkage, (2) complicated ethics processes, (3) underdeveloped national data infrastructure, and (4) social inequalities among the patients that can influence their willingness to share data for secondary use.

Potential Impact

This study can help inform the implementation of the European Health Data Space (EHDS) Regulation in Ireland, which will regulate secondary use of health data across the EU and nationally. The study can also help influence national policy efforts towards a  digital health system for all.

 

 

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