New guidelines on collecting important health and social care information have been published today by the Health Information and Quality Authority. Professor Jane Grimson, Director of Health Information with HIQA, said, “The purpose of HIQA’s new document, Guiding Principles for National Health and Social Care Data Collections, is to provide current and future data collections with advice on the best way to collect and use healthcare generated data.”

“National health and social care data collections are national repositories of routinely collected health and social care data in the Republic of Ireland. They play a crucial role by providing a national overview of a particular health or social care service. Ultimately, their primary purpose is to improve the quality and safety of these services and there is little point in investing considerable time, effort and resources into producing a high quality data collection, if the data is not used to the maximum benefit of the population it serves. In order to do that, it is essential to promote, encourage and facilitate the use of the data.”

National data collections range in size from large national data repositories, such as the National Cancer Registry Ireland (NCRI) and the Primary Care Reimbursement Service (PCRS) to smaller patient registries.

HIQA’s guiding principles incorporate national and international evidence and promote a practice that is up to date, effective and works towards greater consistency across all national data collections.

“These principles provide a basis for planning and measuring improvements as well as identifying and addressing gaps and quality issues. Therefore, they will drive continuous improvement by providing achievable goals for the national data collections.”

The guiding principles cover the themes of governance, statement of purpose, legislation and standards, use of resources and information, data quality, information governance, and workforce.

Professor Grimson said: “The Authority recognises that there is a wide variance in the size, structure and function of each national health and social care data collection. Therefore, while the implementation of the principles should be proportionate to the size and complexity, they nevertheless constitute the key requirements for all national collections irrespective of size and complexity. We have aimed these guidelines primarily at the management units, organisations or agencies responsible for management of the national collections.”

The delivery of safe and effective healthcare to patients depends on health information being accurate, valid, reliable, timely, relevant, legible and complete. Historically in Ireland, as in many other countries, our national data collections have evolved over time in an independent and largely uncoordinated fashion.

“Although there are examples of very good practice, this lack of coordination has led to a fragmented health information infrastructure. The guiding principles provide a framework of best practice to enable national health and social care data collections collect quality data, work towards driving improvements in health information, ultimately leading to safer better care for all,” Professor Grimson concluded.

Further Information: 

Sinead Whooley, Communications Manager, Health Information and Quality Authority, 01 814 7488 / 087 922 1941, swhooley@hiqa.ie

Notes to the Editor: 

• The benefits to national health and social care data collections of adopting these guiding principles include:
  • improved information governance to increase confidence in the confidentiality and privacy of health information
  • the quality of information will be better assured
  • the duplication of data entry effort will be reduced
  • better use of public monies benefiting all users of health and social care services
  • relevant information will be more accessible for informed decision making
  • an increase in the reliability of information which will facilitate more strategic performance monitoring and planning
  • improved ability to compare data and monitor trends over time
  •  health and social care policies based on better information
  • clear information on the limitations or restrictions of the data provided
  • better health and social care data and information leading to better health and social care outcomes for individuals.
• Under the Health Act 2007, HIQA has a statutory remit to develop standards, assess value for money and cost effectiveness, evaluate information and make recommendations about deficiencies in health information.
• The importance of information to the Irish health system has been highlighted by a number of government and external organisations.
• It is expected that the forthcoming Health Information Bill will include a provision to allow the Minister of Health to designate those national data collections to which standards will apply.