A new national survey has found that the vast majority of people in Ireland are happy for information about their health to be collected, used and shared electronically; however, access and security of the information must be protected.  

Over 1,300 people in Ireland took part in a survey and focus groups carried out by the Health Information and Quality Authority (HIQA), in partnership with the Department of Health and the Health Service Executive (HSE).

The engagement was carried out to ensure people are involved in important decisions about their health information and that their rights are upheld as Ireland continues to advance the implementation of integrated care and digital health technology, in line with Sláintecare.

The survey found that:

• 97% believe it is important for healthcare professionals to have access to their information when treating them.
• 99% believe it is important that professionals have access to their digital care record at a time when they are unconscious.
• 94% believe health information should be used to improve the quality of care provided to patients and for research.
• 86% would like to have access to their own digital records via a national patient portal.

However, people said they would like to be informed about what information will be shared between their GP and hospital, who will use their health information and for what purpose, and who has accessed their record. Furthermore, any future health information policy must consider patient consent, the security of the information and that some information, such as addiction issues or sexual health, may be considered more sensitive.

Welcoming the findings, Minister for Health, Stephen Donnelly, said: “I welcome the publication of the findings of the National Public Engagement Survey on Health Information, and I am very encouraged to see how members of the public recognise the importance of sharing health information for their direct care, but also for effective and targeted service planning, quality improvement and research. I am also delighted to see that members of the public understand the benefits of moving to electronic healthcare records and would like to see them implemented, provided information is kept safe and secure. This is a key goal of our eHealth Strategy and an important enabler of Sláintecare reforms. I look forward to receiving the recommendations from HIQA so to inform our delivery of eHealth in Ireland.”

Rachel Flynn, HIQA’s Director of Health Information and Standards, said: “The findings of this survey show that a move towards a digital healthcare system is welcomed. People see the value of sharing health information electronically and of healthcare professionals having quicker access to a patients records. However, in the aftermath of the cyberattack on HSE systems, it is more important than ever that the public is assured about the security of patient information.

“It is also essential that patients are sufficiently informed about any use of their information. As such, HIQA will use these findings to develop national recommendations for the Minister for Health on a model for the collection, use and sharing of personal health information. This will ensure that people’s personal health information is kept safe, and that their rights to privacy and confidentiality are upheld.”

Paul Reid, CEO HSE, welcomed the findings of the study: “These positive results indicate that people understand, value and trust the importance of timely health information supporting safe and efficient health and social care decisions. People trust healthcare professionals with their data and understand how their health information can lead to appropriate and timely direct patient care. By engaging with people, they feel it is important that health information is used for purposes beyond the direct care of a patient, such as quality improvement, service planning, and health-related research, in so far as it provides personal or public benefit. These findings will inform the HSE’s Corporate Plan 2021-2024 commitment around patient data and information, and longer term in how fundamental elements of Sláintecare vision will be delivered.”

The findings will be used to make improvements to Ireland’s health information and eHealth landscape.

Ends.

Further information:
Marty Whelan, Head of Communications & Stakeholder Engagement
01 814 7480/085 805 5202, mwhelan@hiqa.ie

Notes to Editor:

• Health information is information that is collected about patients in different healthcare settings such as at the GP, hospital or pharmacy.
• The National Public Engagement on Health Information took place between October 2020 and March 2021.
• The engagement identified three key areas in relation to health information:
  • the use of health information for direct patient care
  • the use of health information beyond the direct care of the patient
  • people’s views in relation to digital health records.
• The telephone survey was conducted with a representative sample of 1,228 Irish people aged 18 and over.
• 14 focus groups were held with 85 people that represented members of the public, patients, and members of different service user groups.
• International evidence has shown that public engagement and involvement is extremely important for the successful introduction of new technologies.
• The findings will be used by HIQA to develop recommendations in the area of health information, such as in relation to a model for the collection, use and sharing of health information in Ireland. The Department of Health will use the findings to inform the development of national policy and strategy in relation to health information. The HSE will use the findings to support the development and implementation of new technologies for health and social care that will support a more integrated care model in Ireland, as set out in Sláintecare.
• To enable Sláintecare and integrated care, the HSE has identified a number of key national strategic eHealth programmes which must be delivered:
  • Individual Health Identifier
  • Electronic Health Record (National Shared Care Record, Community, Acute and Integration capability)
  • PrimaryCare IT
  • ePharmacy
  • Maternal and Newborn Clinical Management System
  • National Medical Laboratory Information System
  • National Integrated Medical Imaging System.