In European countries, under GDPR, individuals 'own' their personal data, which includes medical information i.e. patient data.
In Ireland, individuals 'own' their patient data, but not necessarily the record that houses that data.
So, people in Ireland have a right to access their medical records but can only do so on request. Meanwhile, health systems are collecting more and more information about patients as well as their diseases and treatments and how they impact individual patients. Often data is stored in incompatible, inaccessible systems that make it difficult or even impossible to share or even reuse the information to improve patient outcomes.
In addition, researchers and companies who are seeking new treatments and processes are finding it increasingly difficult to obtain anonymised or de-identified patient data for these purposes, which could bring potential benefit to Irish patients. The challenges for all stakeholders (individual patients, hospitals, private industry) to accessing and sharing patient data to fulfil their value are not just practical and legal, but also cultural and ethical.