A 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, but they want access and security of the information protected.
Over 1,300 people in Ireland took part in a survey and focus groups carried out by HIQA, in partnership with the Department of Health and the HSE.
The survey found that:
- 97% believed it was important for healthcare professionals to have access to their information when treating them.
- 99% believe it was important that professionals had access to their digital care record at a time when they were 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 would be shared between their GP and hospital, who would use their health information and for what purpose, and who had accessed their record. Furthermore, any future health information policy should consider patient consent, the security of the information and that some information, such as addiction issues or sexual health, might be considered more sensitive.
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.”
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
- Maternal and Newborn Clinical Management System
- National Medical Laboratory Information System
- National Integrated Medical Imaging System.