Article by Clarisse Girot, Limor Shmerling Magazanik and Eric Sutherland: “Every day, healthcare and health research systems around the world generate vast amounts of data that could profoundly transform how we manage public health and understand, prevent, and treat diseases. From electronic health records and genomic sequences to imaging studies and population health statistics, responsible use of this information could accelerate medical research and fuel medical breakthroughs.
The core challenge for governments is to strike a balance between using health data for public good and safeguarding individual rights like privacy and autonomy. This requires distinct types of legal and technical protections, depending on how the data are collected and used.
The OECD Recommendation on Health Data Governance encourages countries to make health data available for public interest uses such as research and innovation, while safeguarding individual privacy and freedoms. The level and type of safeguards that are needed depend on how the data are collected and used. In clinical research, where patients participate directly in trials or medical studies, a key requirement is informed consent, recognising the importance that individuals can exercise their right to make autonomous decisions…(More)”.
