The Health Information and Quality Authority (HIQA) has published six recommendations for a more integrated approach to national health and social care data collections.

Commenting following the publication of Recommendations for a more integrated approach to National Health and Social Care Data Collections in Ireland, Rachel Flynn, Acting Director of Health Information, said: “A more integrated approach to Irish health and social care data collections will reduce duplication and inconsistency, and will also improve the quality of health and social care data. This will enable improvements in the delivery of safe care, decision making, monitoring and planning in the Irish health and social care system.

“Today HIQA is making six recommendations to the Minister for Health about how to secure these advantages for people who use and provide health and social care services in Ireland. HIQA’s recommendations include a recommendation that the development of a strategic framework for national health and social care data collections in Ireland should be prioritised, setting out a roadmap and informing policy development for these collections.

“HIQA recognises the role of national data collections in our health and social care services. Irish data collections have significant potential to contribute to improving quality and safety both for the individual and the population. However this potential is not being realised because of issues with data quality, lack of standardisation, duplication of effort and information that is not used to its full potential.

“A strategic framework, including a detailed roadmap, will lead to greater integration of our national health and social care data collections. Implementation of such a roadmap will take many years but, as other countries have found, it reduces fragmentation and duplication, and therefore reduces costs and delivers better value for money. The establishment of an Information Policy Unit in the Department of Health would also be crucial for successfully implementing the recommendations that are outlined in this report.

“Improvements in data quality will lead to improvements in the delivery of safe care, decision making, and monitoring and planning of services as these will all be based on quality information. Increased secondary use of information, within the parameters of data protection legislation, will also be enabled.  Adopting a more coordinated and strategic approach will result in better use of resources and increased efficiencies.

“HIQA has issued these recommendations to the Minister for Health and we look forward to their implementation and resulting improvements in the quality and safety of health and social care for all who use services in Ireland.”

ENDS

Further Information: 

Marty Whelan, Head of Communications, Health Information and Quality Authority, 01 814 7484/ 087 2447623 @hiqa.ie

Notes to the Editor: 

HIQA has a broad statutory remit, including both regulatory functions and functions aimed at planning and supporting sustainable improvements.  In accordance with the Health Act 2007, (sections 8(1)(j) and 8(2)(d)), one of the key functions of the Authority is to provide advice to the Minister for Health and the HSE about deficiencies identified regarding health information.

The six recommendations made to the Minister for Health are:

1. The development of a strategic framework for national health and social care data collections in Ireland should be prioritised, setting out a roadmap and informing policy development for these collections.
2. Oversight for all national health and social care data collections should be assigned to a specific organisation at a national level.
3. National health and social care data collections should be included in national information and ICT strategies, and also in the implementation of key ICT projects.
4. All national health and social care data collections should comply with legislative and regulatory requirements, including Freedom of Information Acts, Data Protection Acts and national health information standards.
5. The organisation responsible for the oversight of national data collections should develop a data quality framework to drive improvements in the data quality of all national data collections.
6. The use of, and access to, information from national data collections should be optimised to deliver better outcomes for the public, while protecting the privacy and confidentiality of personal data.

Although there are a number of examples of good practice, similar to the international experience, national collections in Ireland have evolved over time in a largely uncoordinated fashion. This has led to the development of isolated ‘silos’ with significant variation in quality, fragmentation, duplication, access problems, and increased costs. This results in service users being asked to provide the same information on multiple occasions. This in turn prevents the safe, effective, transfer of information.

National data collections range in size from large national data repositories, such as the National Cancer Registry Ireland (NCRI) and the National Intellectual Disability Database (NIDD), to smaller patient registries such as the Alpha-1 patient registry, (which compiles detailed information on patients in Ireland with the genetic disorder Alpha-1 antitrypsindeficiency, that can cause lung and liver disease).

The most recent Catalogue of National Health and Social Care Data Collections ⁽²⁾(March 2014) identifies 108 national collections of health and social care data in Ireland. The governance structures of these national data collections in Ireland vary greatly. Some have been established on a statutory footing, while others are managed by external bodies or agencies on behalf of the Health Service Executive (HSE). 

International evidence suggests that harmonising national data collections leads to improved efficiencies and value for money, as well as improved data quality and usability of information for everyone’s benefit.