The Federal Government’s Health Care Homes is forcing patients to have a My Health Record to receive chronic care management through the program, raising ethical questions and concerns about discrimination.

The government’s Health Care Homes trial provides coordinated care for those with chronic and complex diseases through more than 200 GP practices and Aboriginal Community Controlled Health Services nationally, and enrolment in the program requires patients to have a My Health Record or be willing to get one.

But GP and former AMA president Dr Kerryn Phelps claimed the demand for patients to sign up to the national health database to access Health Care Homes support is unethical.

“I have massive ethical concerns about that, particularly given the concerns around privacy and security of My Health Record. It is discriminatory and it should be removed,” Phelps told Healthcare IT News Australia.

Under a two-year trial beginning in late 2017, up to 65,000 people are eligible to become Health Care Homes patients as part of a government-funded initiative to improve care for those with long-term conditions including diabetes, arthritis, and heart and lung diseases.

Patients in the program receive coordinated care from a team including their GP, specialists and allied health professionals and according to the Department of Health: “All Health Care Homes’ patients need to have a My Health Record. If you don’t have a My Health Record, your care team will sign you up.”

Phelps said as such patients who don’t want a My Health Record have been unable to access a health service they would otherwise be entitled to.

“When you speak to doctors who are in involved in the Heath Care Homes trial, their experience is that some patients are refusing to sign up because they don’t want a My Health Record. So it is a discriminatory requirement.”

[Read more: Greg Hunt announces legislative changes to tighten privacy and security protections for My Health Record | Opposition calls for My Health Record roll out to be suspended as AMA seeks greater privacy protections]

It has also raised concerns about possible future government efforts to compel Australians to have My Health Records.

“The general feedback I’m getting is that the Health Care Homes trial is very disappointing to say the least but, nonetheless, what this shows is that signing up to My Health Record could just be made a prerequisite to sign up for other things like Centrelink payments or workers compensation.”

Human rights lawyer and Digital Rights Watch board member Lizzie O’Shea claims patients should have a right to choose whether they are signed up to the government’s online medical record without it affecting their healthcare.

“It is deeply concerning to see health services force their patients to use what has clearly been shown to be a flawed and invasive system. My Health Record has had sustained criticism from privacy advocates, academics and health professionals, and questions still remain to be answered on the privacy and security of how individual's data will be stored, accessed and protected,” O’Shea said.

[Read more: Technical chaos and privacy backlash as My Health Record opt out period begins | My Health Record identified data to be made available to third parties]

Health Minister Greg Hunt this week announced legislative amendments to restrict access to individuals’ My Health Records by law enforcement and government agencies following a privacy backlash that had grown in momentum since the three month opt out period began on July 16.

Records of those who have chosen to opt out of the system will also now be deleted. Previously, data would remain in the system until 30 years after a person’s death, or when date of death was unknown for 130 years after the date of birth.

The three-month opt out period has also been extended to November 12.

About 6 million people currently have a My Health Record and remaining Australians will have a record created for them by the end of the year unless they opt out.

The Opposition's Shadow Health Minister Catherine King claimed the government's changes don’t go far enough.

“Minister Hunt’s response to this fiasco that has become the implementation of the My Health Record is entirely inadequate. We’ve had weeks where the minister has been out there saying there is nothing to see here, there is no problem, particularly no problem when it comes to the legislative provisions relating to court orders and access by law enforcement bodies. We now see that, again, that was entirely untrue,” King said.

“We don’t believe that anything less than a suspension of the opt-out of the My Health Record, whilst the government rebuilds community trust in the My Health Record, will be sufficient. This government has presided over a failure of implementation, and it comes with a litany of other failures. When it comes to the National Disability Insurance Scheme implementation, when it came to Census fail, when it comes to the roll out of the National Broadband Network.”

According to O’Shea, the Health Care Homes revelation raises further concerns about a system that has been mired in recent controversy. She said Indigenous people may be particularly wary of My Health Record, penalising some of the most vulnerable Australian patients.

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