The OECD Digital Economy Paper No. 376, Facilitating the Secondary Use of Health Data for Public Interest Purposes Across Borders, examines how countries can enable health data to be reused for research, public health, innovation and health-system improvement while protecting privacy. Drawing on desk research and a 2024 OECD round table with 200 participants from 33 countries, it focuses on governance, approval processes and public trust.
Key insights:
Health data account for more than 30% of global data assets, yet less than 3% are used for decision-making. The report describes this underuse as a missed opportunity for research, artificial intelligence, patient safety and health-system improvement.
Different laws, definitions and approval procedures make cross-border projects difficult. The report recommends common terminology and harmonised criteria for determining when secondary data use serves the public interest.
Consent is not always a suitable legal basis, particularly for large, retrospective or longitudinal studies where patients may be unreachable. Lawful alternatives should therefore be available when consent is impossible or impractical, provided that strong safeguards are applied.
Complex approval systems can create substantial costs without improving protection. An Ontario hospital’s process involved nine approvals, more than 130 steps and 44 organisational handovers, requiring at least 18 months and CAD 50,000. After redesign, access took less than three months with equivalent privacy and security controls.
Public support depends heavily on trust. The chart on page 29 shows that an average of 64% of surveyed participants supported secondary health-data use by public health authorities, while 24% required anonymisation. Support varied from 88% in Israel and 84.6% in Canada to 25.5% in the United States.
The report recommends evidence-based and risk-based approval procedures, streamlined access, trusted health-data networks, regular public surveys, citizen participation and meaningful patient access to records. Figure 5 on page 36 summarises these recommendations under three areas: policy, process and people.