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Common governance model: a way to avoid data segregation between existing trusted research environment.

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|February 29, 2024
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Summary

Trusted Research Environments (TREs) enable secure data access using the "five-safes" framework. Standardizing TRE governance is crucial for multi-TRE collaborations and federated analysis, enhancing research precision and rare disease studies.

Keywords:
Trusted Research Environmentsdata governancedata protection

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Area of Science:

  • Health Informatics
  • Data Governance
  • Bioinformatics

Background:

  • Trusted Research Environments (TREs) facilitate secure data access via the
  • five-safes
  • framework, but a lack of standardized approaches hinders cross-TRE data analysis.
  • Varied governance models across UK TREs limit understanding and collaboration potential.

Purpose of the Study:

  • To document governance features of major UK TREs contributing to national analysis.
  • To identify elements facilitating multi-TRE collaborations and federated analysis.

Main Methods:

  • Summarized governance characteristics (data access, request procedures, models) of 15 UK TREs.
  • Conducted case studies of multi-TRE collaborative analyses.
  • Identified commonalities in governance and architectural considerations for federated analytics.

Main Results:

  • All 15 UK TREs permit pooled analysis of aggregated outputs post-disclosure control.
  • Data access request and disclosure control procedures vary significantly across TREs.
  • In 2023, 40% of TREs held ISO 20071 accreditation; 56.2% participated in four-nation analyses.

Conclusions:

  • Secure multi-TRE individual-level data analysis is technically feasible but requires robust governance frameworks.
  • A standardized governance model is essential for evolving TREs into a cohesive multi-TRE ecosystem.
  • Addressing stakeholder and public concerns is vital for successful multi-TRE data sharing.