IDERHA delivers report on relevant policy and strategy around reuse of health data

IDERHA’s team focusing on policy recommendations has been scanning the European and international landscape of policy and legislative instruments to highlight those that have a bearing on how IDERHA seeks to acquire, collect, process and use health data. This includes its intended development and use of AI and mobile applications to be used by patients. 

The team has signposted relevant instruments, or parts of instruments, to which IDERHA will need to conform and draw particular attention to policy and legislative gaps requiring the attention of external stakeholders and policymakers. The findings have been presented at meetings of the Integrated Data Access Governance Council (IDAGC), which is comprised of IDERHA stakeholders and external thought leaders.

These findings and recommendations were collected in a report, "Integration of Heterogeneous Data and Evidence Towards Regulatory and HTA Acceptance" (downloadable as PDF on Zenodo). It updates and extends an earlier report created by the same team. The report presents (in Appendix 2) the main areas of potential policy and strategy (including European Regulations) that can influence the IDERHA secondary data reuse landscape. The most important areas have been elaborated on by invited project experts to explain the policy instrument(s), how each might impact IDERHA, and how IDERHA should respond. These templates are included in Appendix 1.

Some issues proved to be cross cutting across multiple policy instruments and templates, and they have been synthesised and discussed in the report. 

The report was written under the responsibility of IDERHA Work Package 6, Task 6.2, and finalized as Deliverable 6.4. Recommendations arising from this work will be taken up within Task 6.3 and included in future deliverables.