'At Risk' Australians Blocked From My Health Opt-Out

"If you've got a right to opt out, it shouldn't cancel your right to care."

Patients with chronic conditions will be unable to opt out of the My Health Records system if they want to use an important government care plan, a move one health group said would leave vulnerable people "at risk".

At least 20,000 people cancelled their health records in the first few days of the opt-out system, amid fears about privacy, hacking, and sharing of sensitive health information with police or other government departments. Health minister Greg Hunt was last week forced into tightening privacy controls.

The changes now allow any Australian to permanently delete their My Health Record, but those with a chronic condition will be blocked from enrolling in a promising government trial of one-stop-shop care unless they agree to have a record created.

People have expressed concern about privacy, hacking and security of My Health Records (Getty Images)

The federal government is currently running the first stage of a trial of the Health Care Homes project, to help those with chronic or complex conditions access streamlined care plans. The program's website outlines an example where a person's GP, nurse, specialist and allied health worker would be working to one co-ordinated care plan.

The 2014-15 National Health Survey found 50 percent of Australians had at least one prominent chronic condition, such as arthritis, asthma, diabetes, cancer, cardiovascular disease,  or mental health conditions, while nearly a quarter of all people had two or more such conditions.

The Health Care Homes program is seen as a promising development, but eligibility criteria on the website said participants in the trial must "have a My Health Record" or be "willing to get one."

My Health Record confirmed this on Twitter, as did the Department of Health in a statement to ten daily.

"If as part of the enrolment process a patient does not wish to have a My Health Record created, they are not enrolled and will continue to receive high quality care as currently provided and funded under Medicare," a department spokesperson said.

The department noted that if someone enrolled in the trial then decided to opt-out, they would not be removed from the program.

The Health Care Homes trial aims to streamline complex care plans for people with chronic conditions (Getty Images)

"The My Health Record facilitates better coordinated care for patients with chronic and complex conditions... This is especially important for these patients who have many people involved in their care, and may often transition between the hospital and primary care sector," the department spokesperson said.

Christine Walker, executive officer of the Chronic Illness Alliance, said she understood the rationale behind trial participants requiring a My Health Record but said the decision to exclude patients who opt out was wrong.

"The fact people can choose to opt out does actually mean there needs to be other arrangement made for them. The whole opt out process hasn't thought through these things thoroughly," she said.

"If you've got a right to opt out, it shouldn't cancel your right to coordinated care. I can understand how it does, but it needs to be thought out a bit better. If you've got a right to opt out it doesn't mean you should be left at risk. That has not been made clear to people."

(Getty Images)

Asher Wolf is a freelance journalist, consultant and digital rights advocate. She has a chronic condition and, while not enrolled in the Health Care Homes trial, said she was opposed to the health record requirement.

"As a person with a chronic condition, I find it deeply disturbing the government is using nudge tactics to force people to use insecure platforms that might pose privacy threats if they wish to use basic healthcare services," she told ten daily.

Wolf said she was concerned about a movement from government to force people to sign up to certain online platforms before accessing basic essential services.

"It's like school fees in Victoria where you can only pay them on a certain type of card. It's problematic, you shouldn't have to use a particular platform to access a mandatory service," she said.

"They'll have this problem where the people who are least digitally connected, like people on low incomes, with disabilities, or in remote communities, can't access the systems they need most, because it requires them to be digital."

"I don't trust in the competence of the government to maintain security over the data they're harvesting from citizens. I don't want to give them more than i have to, but they also refuse to provide alternatives to give me ownership over my data."

Contact the author: jobutler@networkten.com.au