“People should be the owners of their own health data” is the recommendation from a recent examination carried out by the Irish Platform for Patients Organisations, Science and Industry (IPPOSI)
During six sessions organised by IPPOSI, 'jurors' cross-examined the evidence and deliberated together to arrive at a “verdict” on who should have access to their health information and for what purposes. The 25 strong jury concluded that citizens must be the owner of their own health data, that citizens should be able to easily access their health data if they wish to view it, and that all citizens must be able to actively manage and consent to the use of their data on an ongoing basis.
They also discussed the potential for data breaches, and they called for robust cybersecurity solutions, safeguards to protect health information, and a zero-tolerance approach to the misuse of health data.
The jury presents this verdict to Irish health policy-makers for their consideration in deciding the direction of travel for legislation, policy and practice in this area.
You can read the full report on the IPPOSI website here: https://www.ipposi.ie/wp-content/uploads/2021/09/IPPOSI_CJury_Full_Report_06092021.pdf