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Key considerations to inform policy for the collection, use and sharing of health and social care information in Ireland

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The use and sharing of health and social care information is essential for providing high-quality direct care and for other important uses, such as the planning and management of services, public health, and research. To date, there has been an inadequate approach to the collection, use and sharing of health information in Ireland.

Currently in Ireland, health information systems, policies and strategies are immature, under-developed, and lagging behind other European countries.

This paper sets out how progress is needed across four key areas to ensure a rights-based approach underpins health information and eHealth developments:

  • A national health information engagement strategy should be developed to outline a coordinated and ongoing engagement approach with the public and with health and social care professionals on health information.
  • There needs to be a solid legislative framework in place to enable change, progress and developments in health information.
  • Appropriate national governance structures should be established to oversee and lead on the changing health information landscape including the establishment of a national strategic entity for health information.
  • Improved infrastructure to support the collection, use and sharing of data is needed, including a citizen health portal and national data sharing and linkage service, and these must be underpinned by best practice technical, security and data quality standards.

Each of these four areas are interdependent, meaning failure to address one area could impede or stall progress in the other areas. Progress is needed across all four areas to promote a modern, future-focused and data-rich environment for health and social care in Ireland.

Summary of Stakeholder Involvement: Key considerations to inform policy for health information in Ireland

This document presents a summary of stakeholder involvement in the development of key considerations to inform policy for the collection, use and sharing of health and social care information in Ireland. Stakeholder involvement included an eight-week public consultation, focus groups with members of the public and health and social care professionals, and individual meetings with targeted stakeholders.

Summary of Key considerations

This document presents a plain language summary of the key considerations to inform policy for the collection, use and sharing of health and social care information in Ireland.

Infographic

We have developed an infographic which provides an overview of the key considerations to inform policy for the collection, use and sharing of health and social care information in Ireland.

Examples of challenges and opportunities in the area of health information

We have developed examples that illustrate some of the challenges and opportunities in the area of health information in Ireland. These examples were developed based on our engagement with patient representatives, members of the public and people that use different health and social care services.

See Example - Andy and Example - Mary.