'Information black hole' in private healthcare, says official 

Currently, hospitals issue identification numbers to patients within their own campus, but using PPSNs would allow information to be more easily shared between different hospitals and healthcare providers. Picture: Larry Cummins

Ireland’s health information system is incoherent, and an “information black hole” exists in private healthcare, the Oireachtas Health Committee heard.

This is adversely impacting on patients and their treatment, according to the Department of Health's assistant secretary in charge of the Research & Development and Health Analytics division, Muiris O’Connor.

The new Health Information Bill 2023, currently under pre-legislative scrutiny, is needed urgently to modernize and adequately digitize healthcare which is lagging behind other sectors, he said.

The reality is that, at present, the health information system does not exist at a coherent and coordinated national level. Instead, it operates at organisational level with considerable reluctance to share information.

“When it comes to the private side of the health system, there is an information “black hole” which wholly undermines any serious attempt at population planning.

“In addition, healthcare lags behind other areas of society in terms of digital innovation. All of that directly impacts adversely on the treatment of patients, on those who provide that care and on policy-making and planning processes.

“I am not going to say those challenges are new. They are not. That makes the Bill overdue and urgent.” 

Under the bill, access to healthcare and medical records would be streamlined through the use of people’s Personal Public Service Number (PPSN) as their unique health identifier.

Currently, hospitals issue identification numbers to patients within their own campus, but using PPSNs would allow information to be more easily shared between different hospitals and healthcare providers.

But due to legacy issues, an Individual Health Identifier (IHI) number system had already been rolled out.

These IHIs were issued to everyone in the country some three years ago and have been given to every baby born since, Mr O’Connor said.

These numbers are still not being used to ensure connectivity and clear communications between hospitals and healthcare providers. He agreed that PPSNs should be used as the unique identification number in healthcare instead to simplify systems.

Eircodes would also be used to help ensure unique, accurate, and safe identification for healthcare under the bill, he said.

Personal health information

The legislation would also aim to strengthen people's existing rights to their personal health information, including putting a legal obligation on health services to provide health records to another health professional at the request of the individual. It would also make the buying and selling of personal health information (by anyone other than the individual concerned) an offence.

The bill would also establish a new National Health Information Authority to lead the new health information framework.

The National Health Information Authority would mandate the provision of health information and also put in place strict governance rules for accessing it.

Health information provided could be made available to legitimate third parties but only on an anonymised or pseudonymised basis under the bill, which also creates a new offence where an attempt is made to identify individuals from that data.

Mr O’Connor said data security and patient confidentiality are a priority, and only professionals with immediate and legitimate interest in a patient’s medical files could access them.

Ireland would adopt learnings from other countries to protect patient data, like by adopting a system in Estonia where health records show an audit of every individual who has accessed them. A patient has ready access to this audit and can complain if they see someone accessing their files who they believe should not.

“I don’t like how behind we are other countries regarding the digitisation of health, but we can learn from other countries,” he said.