There is an urgent need to reform our national health information system, particularly in the areas of strategy, leadership and governance, and legislation.
Our recent paper on the need to reform the health information system highlights how Ireland’s health and social care system will remain inefficient and ineffective without accountability, legislation and strategic investment in health information.
Reform in the three areas of strategy, leadership and governance, and legislation will reduce significant gaps and deficiencies in our health and social care services, and improve care for everyone. Without this foundation in place, a joined-up integrated health and social care system for all is unattainable.
Ireland needs a national health information strategy which provides a clear vision and direction for the reform of our health information system and to demonstrate to people using services, service providers and the general public, the benefits of health information. Over the past 20 years, Ireland has produced several strategies and reports on health information, and the Sláintecare programme places a significant emphasis on the need for eHealth to enable integrated care. We are calling for a new health information strategy to be implemented, taking account of how health information is collected, used and shared not only primary care purposes, but also for uses beyond direct patient care, such as research.
Strong strategic leadership and governance in essential to oversee the effective implementation of health information systems and to enable the collection, use and sharing of health information across the entire health and social care system. In Ireland currently, multiple organisations are responsible for health information, including the HSE, Department of Health, HIQA and Tusla and many more. All of these bodies have their own governance structures. This makes it difficult to understand who is accountable for the health information system at a national level. The 2013 eHealth strategy (2013) called for ‘eHealth Ireland’ to be established – an independent entity responsible for the overall governance and accountability of the eHealth strategy. This entity was never formally set up as envisaged. HIQA is calling for an entity, such as eHealth Ireland, to be set up independent of the HSE. It should have a legislative remit for health information at a national level.
Legislation is also required to set clear rules and regulations around how health information can be collected, used and shared. This is important from a transparency point of view and to ensure people’s rights are protected through the rule of law. Legislation is also needed to enable new technologies and the public are ready for this. The findings of the recently published national public engagement on health information show that people see the benefits of moving towards a more integrated digital healthcare system once safeguards are in place to protect their privacy. We are calling for the introduction of a legislative framework which covers people’s health information across both public and private healthcare in Ireland.
Urgent reform of our national health information system is needed to ensure everyone involved in delivering and receiving care — from the general public, patients and service users, health professionals to policy-makers — to make the right choices about their care based on the best available information.
Read our full position paper, or watch our video series, to learn more here.