My Health Record deadline looms, with privacy experts and Government at odds
If you are still unclear about how My Health Record works or whether you should have one, you are not alone — many people say they are still confused.
- January 31 is the last day to opt out of having a My Health Record created for you
- Many people are uncomfortable with having multiple agencies and doctors access their information
- The chairman of the AMA says My Health Record is comparable to internet banking, and will save lives
Privacy experts are concerned about the system’s security, yet health experts are urging Australians to join, saying a connected data system will save lives and reduce medical errors.
After January 31, if you haven’t chosen to opt out, a My Health Record will automatically be created for you.
For people like Ash Polzin who have a complex health record and a history of incorrect diagnoses, they prefer opting out.
During the 20-year-old’s two-year transition from a woman to a trans-man, Ash was seen by multiple medical specialists and given varying diagnosis and treatment plans.
“Even digital health advocates and the allied health networks that I’m involved in came to the decision that it wasn’t the right choice for me,” Ash said.
“A big part of that was knowing that I already have incorrect diagnoses on my health records in hospitals and I don’t want those impacting my care.”
Confusion about what is in My Health Record
Ash isn’t comfortable with multiple agencies and doctors knowing about their gender transition without express consent.
“Being trans, that’s something that I get the choice to disclose.
“I would have considered opting in if I was able to better control who could see my records, but as it stands, you can only control it by organisation, not by practitioner or even discipline.”
Users have some privacy controls, including the option to choose a record access code and give it only to healthcare professionals they want to access their information.
Australian Digital Health Agency (ADHA) medical officer Dr Meredith Makeham said when people open their My Health Record, they will discover there is no collection of clinical information.
“A common myth out there is that people think the My Health Record will reach into the past and show all of their old past medical notes from doctors and hospitals. That’s absolutely not the case,” she said.
A few years’ worth of Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data may be uploaded when an account is set up, however.
The Australian Digital Health Agency estimates more than 1 million Australians have already chosen to opt out of the system.
After January 31, you will still be able to delete the profile at any time.
‘It’s like internet banking’: AMA
Chair of the Australian Medical Association ethics committee Dr Chris Moy said having health information available online in an emergency would save lives.
“As many as 230,000 Australians end up in hospitals due to medication and medical errors. That’s an outrageous number of people,” he said.
He said if people had a My Health Record, they would be asked when they visited the doctor if they wanted details of the visit uploaded, which is called a “shared health summary”.
“Pathology and scans will be uploaded automatically, unless the patient says no or has put on a pin code to make it more secure,” Mr Moy said.
Dr Moy compared the My Health Record to internet banking.
“When banking online first came out, everyone was scared, but now we can’t imagine life without it,” he said.
What are the privacy concerns?
In late 2018, the Government added more legislative safeguards in response to privacy concerns, including boosting penalties for improper use and banning insurers from accessing data.
But privacy experts are still worried about what happens to your personal health information once it is in the record.
Data from My Health Record may be given to researchers, as long as identifying details such as names are stripped out. Users can opt out of this in the record’s settings.
But security researcher Dr Vanessa Teague from University of Melbourne said it was wrong to tell people their data cannot be linked back to them, even if it has been de-identified.
“When you have a detailed record about an individual person, you really can’t de-identify it,” she said.
Her research shows a few points of information, such as person’s birth year, the date they had surgery or when they gave birth, are enough to link an entire medical record back to the patient.
That could expose a person to discrimination if they are found to have a chronic illness, or a condition that carries a stigma.
Data governance board won’t be set up until mid-2020
A specially-created data governance board will oversee which companies, universities or other groups can access de-identified data for specific research or public health projects.
It’s unclear who will sit on the board, which is yet to be established, but it must include members from the Australian Digital Health Agency as well as specialists in population health and data science, among other roles.
The first release of My Health Record data for what’s known as secondary use won’t take place until the board is chosen, which is likely to occur mid-2020.
Software problems hinder rollout
Some doctors have questioned the usefulness of My Health Record for more technical reasons.
Across Australia, medical practices use many different types of clinical software that don’t always fully integrate with the government platform.
One popular option called Genie Solutions, for example, does not currently upload specialist letters or prescription records into the system.
Head of Genie, James Scollay, said building in these extra functions is part of the company’s “roadmap”, adding that interoperability is a major challenge for the digital health industry.
“[My Health Record] is not a silver bullet, and improvements will be needed over time, however the status quo is unacceptable and digital technology definitely plays a part in improving things,” he said.
Dr Jill Tomlinson, a plastic and reconstructive surgeon in Melbourne, uses Genie at her practice and said this lack of integration could be a barrier for specialist doctors in particular making use of the national database.
“If it’s not used by people, then it’s not going to be useful and we’re not going to get critical mass,” she said.
While Dr Tomlinson supports the idea of My Health Record, she suggested that overcoming these technical hurdles will be vital if the system is to work for everyone.
So far, she added, My Health Record has not provided her with any clinical information about a patient that could not be obtained through the usual referral process.