We want to hear your feedback on our draft recommendations on a consent model for the collection, use and sharing of health information in Ireland.
The paper makes 10 recommendations to outline the situations when consent is, and is not, required for the use of personal information in health and social care, as well as the need to establish legislative and governance structures, and technical and operational capabilities to support a consent model. It also defines key health information concepts and outlines the need for significant public engagement in this area.
Rachel Flynn, our Director of Health Information and Standards, said: “Sharing personal information in a secure and controlled manner is integral to providing health and social care. We are developing these recommendations to inform national legislation, policy and strategy for health information.
“These recommendations aim to make the process of collecting, using and sharing health information clearer, and ensure that people’s rights in relation to the privacy and security of their health information are upheld.
“We want to hear the views of all members of the public on the draft recommendations before the consultation closes at 5pm on Monday, 10 January 2022. Following the public consultation, the recommendations will be revised. The final recommendations will then be submitted to the Minister for Health.”
The draft recommendations have been published alongside an evidence synthesis document which provides an overview of the current health information landscape in Ireland, and a detailed review of consent models in other countries, which helped inform the recommendations.
Currently, the legislation for health information in Ireland is not fit-for-purpose. In comparison, other countries have developed specific legislation or codes of practice to regulate the collection, use and sharing of health information, which creates a common understanding of how to best use and share information in the interest of patients and the public.
It is anticipated that improved legislation and governance structures in this area will encourage a more appropriate use of health information to support both direct patient care and reasons beyond direct care, such as effective management and planning of health and social care services, improving the quality of care delivery, and health research.
This public consultation builds on the results of a National Public Engagement on Health Information which was published by HIQA in September 2021. This captured the opinions and attitudes of the Irish public in relation to the collection, use and sharing of personal health information. The findings of this engagement were used to inform the development of the recommendations.
Read the draft recommendations and take part in the consultation on www.hiqa.ie.