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My Health Record: almost $2bn spent but half the 23m records created are empty

A decade since it was first announced, the federal government has spent close to $2bn on its troubled My Health Record system, and half of the 23m records created lie empty almost a year after the government made the system opt-out.

The former Labor government first proposed the e-health record system in 2009 as a means for patients, doctors and specialists to share patient history, X-rays, prescriptions and other medical information with ease.

The system was first launched in 2012 with little fanfare and very little uptake. In 2016, it was reported that after four years, only around 4 million people had created a record, and even fewer had actually had any information put in it.

The Coalition government then attempted to salvage the system by rebranding it to My Health Record and moving to make it opt-out in 2018, but the opt-out time period was extended to the start of 2019 amid concerns over security and law enforcement access to the records.

Related: My Health Record failed to manage cybersecurity and privacy risks, audit finds

The Department of Health confirmed to the Guardian that since its inception as the personally-controlled e-health record back in 2009 the federal government had spent $1.97bn on the project.

“This includes the infrastructure development, implementation and ongoing operation of the My Health Record (formerly known as the personally controlled electronic health record system), and the operations of the digital health foundations (including Healthcare Identifiers and the National Authentication Service for Health) upon which the My Health Record system has been built,” a spokeswoman for the department said.

Despite the investment in the project, and the switch to opt-out – meaning people have to tell the Australian Digital Health Agency not to hold a record for them – take up of the My Health Record still remains low.

More than 90% of Australians have a My Health Record created for them, but just over half of those records have anything in them – of the 22.65m records, 12.9m have data in them.

The Royal Australian College of General Practitioners president, Dr Harry Nespolon, said that was an “enormous number” of empty records.

“This is always my argument about opting in, that if this was a service they actually wanted they would opt in.”

Nespolon said electronic medical records internationally had been plagued by difficulty, and “a lot of them had become white elephants”.

“We have always argued all the way that GPs are going to have to be the ‘curators’ of these records, and that takes time and effort,” he said.

“The question is, of these 10 million people [without information in records], do all 10 million really need a My Health Record?”

A spokesman for ADHA said the number of documents going in to records is increasing every month, and currently GPs are uploading between 2m and 3m documents every month.

Including pharmacies, close to 100 million documents were uploaded between November and December, the spokesman said.

“It is not expected that all records would have information in them within the first year as not everyone would see a doctor in that timeframe,” he said.

For the most part, people aren’t checking what is in their own records. In response to Senate estimates questions on notice, the ADHA, which has responsibility for managing My Health Record, reported that the total number of records accessed by patients was 2.07m, and nearly half of those records (980,000) had been accessed more than once.

More people have opted out of the My Health Record system than have accessed a record – with 2.5 million opting out before the deadline at the start of last year.

Just 279,000 documents have been uploaded by patients themselves. Medicare documents make up the vast bulk of the 1.6bn documents uploaded, at 1.2bn, including pharmaceutical benefits reports of 470m as of the end of June last year.

Close to 90% of GPs and pharmacies have registered to use the system as of October last year, and 93% of public hospitals. ADHA reports that 69% of pharmacies and 71% of GPs are actually using the record system.

Related: More than 2.5 million people have opted out of My Health Record

But the percentage drops significantly when it comes to the private and aged health care systems, at 33% and 3% respectively. And less than half (41%) of pathology and diagnostic imaging services are registered to use the health record.

Nespolon said there needed to be better support from the government for GPs in curating the records for their patients.

“There are a large group of people in healthcare who aren’t able to engage or aren’t engaging,” he said, suggesting the government focus uptake on those at-risk patients who need the records the most.

“The concept of a My Health Record is great, but there’s a lot of work to be done.”

The ADHA spokesman said GPs could get the practice incentives payment ehealth incentive to cover the cost of getting on board with My Health Record.

“To receive ePIP payments a practice is required to, among other things, upload an average of five shared health summaries to the My Health Record per full-time GP per quarter,” he said.

In October, the then ADHA chief operating officer Bettina McMahon told a Senate estimates hearing the agency’s initial focus had been on general practice and public and private hospitals, but the agency would now focus on specialists and working with software providers to ensure compatibility with the record system.