Restrictive interpretation of EU data hampering cancer trials

Ireland’s approach to European data protection rules is overly restrictive and not in line with public opinion, according to a new report from Cancer Trials Ireland (CTI). The research suggests that the Irish healthcare system’s restrictive interpretation of the General Data Protection Regulation (GDPR) hinders the potential to provide new treatments to patients. As an example, CTI pointed out that 3,500 industry-sponsored clinical trials started in the first six months of 2024, but only 11 trials included Ireland. 

“Ireland uses the same grounds for implementing GDPR in clinical trials as many other countries, yet somehow, we are interpreting those grounds differently, and more rigidly. We are third last in Europe on the median time it takes to initiate a trial in a hospital, after the clinical trial application is approved,” commented Eibhlín Mulroe, CEO of Cancer Trials Ireland. 

CTI research shows a fragmented system for managing data in Irish hospitals that significantly impacts patient access to trials and damages the country’s reputation as a research destination. Ireland’s interpretation of data protection rules is in contrast with public opinion, which is in favour of a less restrictive approach:

• 79% of Irish people agree it is important that health information is used for research
• 76% are willing to share their health information if they are told how it will be kept safe, and 74% if they know and agree what it will be used for  
• 74% think it’s important that companies and researchers have access to health information and 73% say Ireland should be doing more health research  
• 89% think that GDPR is important
• But 48% believe government should simplify how GDPR is applied in some areas and remove some of the restrictions.

Averil Power, CEO of the Irish Cancer Society said: “The healthcare system’s interpretation of data protection legislation is in direct conflict with the evolution of cancer research and treatment, which tracks commonalities across different types of cancer. The research shows Irish citizens are savvy about how their data could be used and may have a better understanding of GDPR’s aims than policy makers.

“The solution is a national body that defines healthcare guidelines for all hospitals, and across the healthcare system. This would remove the hospital-by-hospital, case-by-case system that delays trials opening and discourages clinical trials sponsors like pharma companies and collaborative groups from coming to Ireland.”