Information about people's lifestyle choices, socio-economic status and whether they are smokers could be recorded in the new health identifier number to be given to every person in the State, the Irish Cancer Society has suggested.
In a submission to the health standards body Hiqa, it said it would be calling on the Department of Health to broaden out the personal data associated with the health identifier to include some of these elements, among others.
The individual health identifier (IHI) will be a unique number, separate to a PPS number, which will be used to trace people through every part of the health system from cradle to grave.
Every person who works in the healthcare system will also be given a number and a national register of IHIs will be established. That register is to be managed by the separate unit within the HSE.
While the number itself will not contain any clinical data, it will contain information such as name, address, date and place of birth, mother’s maiden name and PPS number. It will be attached to all interactions a person has with the health service, such as when tests are ordered or when they visit a hospital, a doctor or another healthcare practitioner.
Hiqa has already acknowledged that there will be privacy challenges in managing the system.
Following a public consultation process, the body last month published the standards that must be followed for the operation of the health identifiers.
Some 70 submissions were received from a range of organisation including doctors’ representative bodies.
Security
Most broadly welcomed the standards and the introduction of individual health identifiers, although some concerns were expressed about security and about the ability of the HSE to manage the system.
In its submission, released under the Freedom of Information Act, the Irish Cancer Society welcomed the Hiqa standards and said the health identifier was a “stepping stone” to establishing better data collection in the health system.
“The health identifier provides an opportunity to record not only data that identifies the individual, but also information relating to their health and social status and lifestyle choices – ie. smoking status, diet, socio-economic status. The society will be calling on the Department of Health to broaden out the data recorded under the health identifier to include some of these elements, amongst others,” it said.
It was “acutely aware of the risks for patient data privacy and confidentiality with the identifier” and said the most important message to the public was that the privacy of their identifier would be maintained.
“If this is not done the society is concerned there will be lots of confusion and mistrust amongst citizens. There have been significant data breaches of citizen’s information in the past few years, and trust needs to be repaired.”
Publishing the standards last month, Hiqa said individual health identifiers were the cornerstone of e-health systems and were key for implementing electronic health records and electronic prescribing.
These electronic systems would greatly improve patient safety.
Other submissions to Hiqa during the consultation process indicated there would be significant challenges for GPs in managing the new health identifiers.