Doctors seek more information from Health NZ on plans for a national patient record database

by Katie Todd

Doctors are seeking more information about a national patient record database that Health NZ plans to launch mid-year.

One primary care clinic in Auckland had threatened its software provider with legal action if it shared "even a single patient record" with Health NZ, for its new Shared Digital Health Record.

The database, which had initial funding of $4 million, was touted as a solution to electronic record-sharing woes across different parts of New Zealand's health system.

Health NZ said it would give health professionals the ability to see a patient's allergies, medical conditions, and any contact they had with healthcare professionals.

Clinical director of the health provider ProCare, Allan Moffitt, said it was a long-awaited initiative which - on the whole - he strongly supported.

However, given the time frame, he said there seemed to be a lack of details.

"[Health NZ] haven't really done substantial consultation with the sector, beyond a few people centrally, and with the public.

"It's really important that we take people along with us on this journey, and that there doesn't seem to be a hidden agenda."

The Shared Digital Health Record would help keep patients safe, he said.

"You end up with people not having to repeat their stories so much because the core information is there... you're less likely to have errors occur in terms of accidental harm from drug interactions or allergies."

Moffitt said his understanding was the database would include health summaries, but not detailed GP notes.

It would build on existing shared electronic systems in Canterbury, Auckland and Wellington, and the Hira health information sharing programme, which was scrapped last year.

Health NZ said it would not take data without permission, and once the system launched, patients would be able to opt out.

But in Auckland, Silverdale Medical CEO Ranyani Perera said she was concerned Health NZ would bypass her private practice and request the information directly from its software provider as it built the system.

"The power and control should stay with the patient, and it is the duty of the provider to protect the patient from undue harm. A lot of harm can come to people when their private information is made available in massive systems."

In an email to her software provider Valentia Technologies, Perera said the majority of patients would object to their data being shared.

"Let me be clear: if even a single Silverdale Medical patient record is transferred into this structure, we will consider it a material breach of our contract with Valentia.

"Additionally, we will support our patients in pursuing a class-action lawsuit against all participating parties," she wrote.

Perera told RNZ Valentia Technologies had not done anything wrong - but she wanted to make her stance clear.

She said there should be a national conversation about the system.

"My primary concern is a patients' right to control, and engagement across the public as to does the public want this? Does the public accept this? Does the public think it's in their best interests? I would say no. If it were my family, I would say opt out."

Perera said many patients were already uncomfortable with administrative staff accessing their records, "let alone government agencies with a poor track record of securing sensitive health data."

Allan Moffitt, who also the chairperson for General Practice New Zealand's Data and Digital Committee, said he was confident the information would be stored securely.

But he said he would like Health NZ to do more to safeguard the database against unauthorised access.

"I think the protection from that is an audit process. I've seen nothing from Health NZ about what sort of audit process is happening to ensure there's no unauthorised access," he said.

Health NZ declined RNZ's interview request and sent a written statement from acting chief information technology officer Darren Douglass.

He said Heath NZ was working to make practices and the public more aware of what it aimed to do and it wanted input from practices and vendors on the information it would gather.

"We acknowledge that plans for the new system are not yet widely known, and are working to make practices and the public more aware of what we aim to do," he said.

Douglass said Health NZ would not take data without permission, and no one would be forced to provide personal information if they do not wish to.

"There are robust processes in place to manage who can access health systems, and all data access and use will be recorded and retained. This will be monitored, and consumers will be able to request to see who has accessed their record."

Douglass said Health NZ had not asked software vendors to share any production health information, but it had been working with those vendors for over a year "on ensuring clinicians can see a patient's clinical record to support continuity of care."

Valentia Technologies told RNZ it was dedicated to protecting the privacy of customers and patients and supporting the "legal, responsible and necessary sharing of data."

President of technical services Ahmed Javad, said the company had formally responded to Perera "confirming our view that the issues raised in the letter address matters that are outside our direct control, and are best discussed with government organisations such as Health New Zealand in the first instance.

"While we regret how this matter came to the fore and the unfortunate involvement of our company, we accept that there are important issues for discussion among all stakeholders in the sector," he said.