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International Review of Engagement, Education and Data Quality Enhancement in relation to Health Data Access Bodies

Status: Published on

The Department of Health, in collaboration with HIQA and the Health Research Board (HRB), was awarded funding as part of the EU4Health programme to support the establishment of health data access body (HDAB) services in Ireland under the HealthData@IE project. 

This project supports the implementation of the European Health Data Space (EHDS) regulation, which is a major health information initiative in all EU countries. One of the aims of the EHDS is to develop HDAB services that facilitate the use of anonymised and pseudonymised health data and therefore, help create more efficient and responsive healthcare systems. This is known as secondary use of health data. The EHDS regulation will enter into force in early 2025, with implementation deadlines from 2027 to 2031. 

HealthData@IE focuses on developing national infrastructures needed for data access. The project will also support programmes of work centred on data quality enhancement, engagement, as well as education.

This review of international best practices highlighted several key findings in relation to engagement, education and data quality enhancement in the context of the secondary use of health data and HDAB services:

  • meaningful engagement and, in particular, building public trust is key to successfully establishing HDAB services 
  • easily accessible education and training on the secondary use of health data, the EHDS and navigating data access systems should be widely available in various formats
  • in other countries, while checks on data quality are generally carried out on data submitted to HDAB services, the responsibility for data quality remains largely with data holders
  • organisations that hold health data should be able to self-assess the quality of their data to identify areas for improvement.

Insights from this review align with HIQA’s previous findings from the National Public Engagement on Health Information, which showed that the vast majority of people in Ireland are happy for information about their health to be collected, used and shared electronically, once proper safeguards are in place. 

The findings in this review will help shape Ireland’s approach to implementing the EHDS regulation and establishing HDAB services.

Findings of the National Public Engagement on Health Information