8 January 2024
By Elaine Murphy
elaine@TheCork.ie
The European Parliament recently gave the green light to the European Health Data Space (EHDS), establishing a robust legal framework for the secure and efficient use of health data by researchers, innovators, public institutions, and industry players.
Deirdre Clune has been a household name in Cork for decades, being a Cllr, Lord Mayor, and MEP
Deirdre Clune, Ireland South MEP and Member of Parliament’s Subcommittee on Public Health, welcomed the EHDS, and explained how the secondary use of data can transform health research across the European Union.
“The EHDS enables researchers, innovators, public institutions, and industry to access large amounts of high-quality health data under strict conditions. Health data holds the potential to revolutionise public health by accelerating the development of new medical products and treatments,” explained Clune.
“The COVID-19 pandemic underscored the importance of such innovation in developing vaccines that saved millions of lives. Therefore, it’s crucial to harness health data and foster innovation that will improve the prevention, diagnosis and treatment of diseases.”
In an example, Clune outlined how a company focusing on supporting Alzheimer’s patients could monitor cognitive and lifestyle data in aging populations. “This information could then inform the design of drugs targeting specific pathways associated with Alzheimer’s progression, based on real-world data reflecting lifestyle factors that influence the disease development”, she added.
In December, The Department of Health was awarded €3.6 million in EU funding to support the establishment of a Health Data Access Body, which will allow Ireland to deliver on the new requirements set out in the EHDS.
MEP Clune also assured that safeguards will be in place to control data usage, “Access to health data will require a permit from a health data access body in each Member State. This ensures data use for specific purposes, within closed, secure environments, and without compromising individual identities. There are also strict regulations to prohibit data use for decisions to the detriment of citizens, such as designing harmful products or services, or increasing insurance premiums.”
“The European Health Data Space marks a milestone in advancing healthcare through responsible data use. By establishing a common framework, we can unlock the full potential of health data while safeguarding privacy and ethical considerations,” concluded Clune.
The regulation will now move into trilogues, where negotiations with the European Council will finalise the text.