The Citizens’ Jury on Access to Health Information, led by the Irish Platform for Patient Organisations, Science and Industry (IPPOSI), has published its deliberations, setting out six recommendations for policy-makers and expressing a strong preference for greater access to health information in Ireland.
After more than 12 hours of online deliberations in April 2021, the 25 jurors concluded that citizens must be the owners of their own health data and that practices, processes and policies developed to manage or share health information must be made in partnership with them. The jurors underlined that health information must not only be easily accessible to every citizen who wants to view it, but that citizens must be able to actively manage, and consent to, the use of their information on an ongoing basis.
The jurors expressed a lack of trust in the State because of past failings in relation to health information collection and use. 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 CALLS FOR:
- Joined-up health records
- Independent Public Champion for health information
- Access to portal to view and manage information
- Protection against sharing information with employers, banks, etc.
- Funding for cybersecurity and zero tolerance for misuse
Jury Recommendation Highlights:
- Health Records: health information should contain up-to-date, complete, joined-up data which provides an accurate and comprehensive account of the individual’s history of contacts with the health service and his/her health record
- Portal: information sharing should be via a portal that is equally accessible to both the patient and the healthcare professionals engaged in their care
- Closed Box: information sharing should be limited, both in terms of what information can be viewed (closed box) and in terms of who can view the information (audit trail)
- Citizen First: health information must be first shared with every citizen who wants to view, and potentially control access to, their own health information
- Public Champion: health information sharing needs to be guided by an independent, State-mandated, public champion who acts in the interest of the citizen, and who is responsible for informing, educating, empowering, and protecting the public
- Inappropriate Sharing: health information should never be shared with employers, banks, or insurance, pension, and marketing companies
- Price to Pay: health information should not be given away ‘for free’, instead it should be treated like a modern-day ‘national resource’ from which society must accrue a tangible, financial benefit (or in-kind benefit) for sharing
- Sanctions: health information misuse should be approached from a position of zero tolerance, especially misuse from within the system, in particular by public servants outside of healthcare professionals
- Security: health information must be appropriately secured by the State, and sufficient resources dedicated towards its security
To download the full verdict report, click here
View all the citizens’ jury outputs on our dedicated citizens’ jury webpage here.