Health data governance for research use in Alberta

Area of Science:

• Health Services Research
• Epidemiology
• Health Informatics

Background:

• Alberta possesses extensive clinical and health services data managed by Alberta Health and Alberta Health Services (AHS).
• Alberta's centralized, single-payer health system (AHS) supports a consolidated data and analytics team for provincial research.
• Existing data infrastructure supports clinical, administrative, disease surveillance, and epidemiological research.

Purpose of the Study:

• To describe Alberta's data custodianship, governance, and streamlined processes for research data access.
• To highlight the role of Alberta Health Services (AHS) in providing consolidated data for research.
• To outline the mechanisms enabling timely researcher access to health data.

Main Methods:

• Centralized data repository creation by AHS from multiple sources (claims, hospital discharge, medications).
• Establishment of streamlined research data access processes: ethics approval, operational approvals, and legal agreements.
• Development of high-performance computing (HPC) infrastructure by the University of Calgary and AHS for big data needs.

Main Results:

• A centralized Data and Research Services (DRS) team within AHS facilitates researcher data extraction and linkage.
• Streamlined processes ensure ethical data use, disclosure, and retention according to Alberta's Health Information Act.
• Efficient data access mechanisms are in place, despite variations in data protection laws across Canadian provinces.

Conclusions:

• Alberta's integrated health system and data governance provide a highly efficient model for research data access.
• The established processes support timely and secure access to valuable health data for research purposes.
• Alberta's approach serves as an effective framework for leveraging health data for public health and research.