The Health Information and Quality Authority (HIQA) has published a new report outlining four policy areas needed to drive improvement in the collection, use and sharing of health and social care information in Ireland.

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

• 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, which must be underpinned by best practice technical, security and data quality standards.

HIQA’s Director of Health Information and Standards, Rachel Flynn, said:

“Currently in Ireland, health information systems, policies and strategies are under-developed. Health and social care professionals cannot easily access patients’ health information where and when they need it, which can lead to repeated tests and delays in care. Ireland needs to develop a shared infrastructure and common approach for the collection, use and sharing of health information across the health and social care service.
“The Irish public have told us that they want access to their health information. In Ireland there is no system to provide citizens with access to their electronic records. The European parliament recently set a target that 100% of European Union citizens will have access to their electronic records by 2030. Bringing Ireland’s infrastructure in line with other European countries will improve the quality of health information, reduce costs, allow citizens to be more involved in their own care and ensure care is more coordinated and efficient.
“Urgent action is needed now to progress our health information system under the four key policy areas of effective engagement; legislative framework; governance structures; and technical and operational requirements. Progress is required across all four areas to promote a modern, future-focused and data-rich environment for health and social care in Ireland. Each of these four areas are interdependent, meaning failure to address one area could impede or stall progress in the other areas.
“We welcome the development of the new general scheme of a Health Information Bill which aims to ensure that Ireland has a fit-for-purpose national health information system, and hope that it will incorporate these policy considerations. We look forward to working with the Department of Health to progress this.”

The key considerations have been informed by public feedback through a national public engagement project and a public consultation, targeted engagement with a broad range of national and international stakeholders, as well as a review of international evidence. The report has been submitted to the Minister of Health for his consideration.

Read the Key considerations to inform policy for the collection, use and sharing of health and social care information in Ireland from the link at the top of this page.
Ends.

For further information please contact:
Marty Whelan, Head of Communications and Stakeholder Engagement
01 814 7480 / 085 805 5202 / mwhelan@hiqa.ie

Notes to the editor:

• Through its statutory function under the Health Act 2007, HIQA develops recommendations, standards, guidance and reviews governance arrangements in the area of health information.
• A number of developments in health information policy and legislation at European level show the need for significant progress in Ireland. These include:
  • The EU Data Governance Act focuses on the re-use of data protected by the public sector, including health data. It will support the set-up and development of common European data spaces to facilitate data sharing between countries and will also establish robust procedures to facilitate the reuse of data across the EU.
  • A recent proposal by the European parliament and EU Council to establish a 2030 Policy Programme entitled “Path to the Digital Decade”, outlines a target that 100% of European Union citizens will have access to their electronic records by 2030.
  • The EU Data Act aims to encourage data sharing and will set up rules on who can use and access what data for which purposes across all sectors in the EU. A proposed regulation will provide a legal foundation for a European Health Data Space (EHDS), which will aim to strengthen and extend the use and re-use of health data for the purposes of research and innovation in the healthcare sector; to help healthcare authorities to make evidence-based decisions; and to improve the accessibility, effectiveness and sustainability of healthcare systems.
• In 2020 and 2021, HIQA, the Department of Health and Health Services Executive carried out a National Public Engagement on Health Information which consulted over 1,300 people on the collection, use and sharing of health information. The report found that:
  • 97% believe it is important for healthcare professionals to have access to their information when treating them.
  • 86% would like to have access to their own digital records via a national patient portal.

Read the full findings here.