The project to engage the public on the collection, use and sharing of health information started in 2019 and concluded in June 2021 and it involved public and/or patient representatives at various stages across its lifecycle in order to gain a broad understanding of the opinions and attitudes of people living in Ireland in relation to the collection, use and sharing of their health information. The project Advisory Group involved three patient and/or public (PPI) representatives, who all provided input into the early planning and design of the national survey. 1200 members of the public were invited to respond to a telephone survey which explored their views around a number of scenarios detailing potential examples of how health information could be accessed, used and shared in the future. A further 36 members of patient organisations, and 36 members of the public were invited to participate in focus groups where issues around health information access, use and sharing were explored in more detail.
