By Rickie Hardiman
In the wake of the Federal Government’s decision to create an electronic health record for all Australians unless they choose to opt out, Sydney consumers are scrambling to assess the pros and cons of the program.
Australians have until mid-October to opt out of My Health Record (MHR), a centralised system which allows health service providers to access patients’ data.
Up until now, patients have only had the record created if they chose to opt in.
Patient records are currently scattered in various formats at GP’s surgeries, hospitals and pharmacies.
The Federal Government plans to eventually have all the information on a centralised database.
My Health Record is an online summary of key medical information including allergies, prescriptions, vaccinations, prior hospital admissions and pathology test results.
Consumers can choose to manage their MHR themselves, adding information, choosing security settings and denying access to certain agencies.
Tools to inform Australians about MHR are being distributed to General Practitioners to help them to advise their patients about the system.
General practitioner and former President of the Australian Medical Association (AMA) Professor Kerryn Phelps said “Like most doctors I can see the benefits of a My Health Record, particularly for people with chronic complex medical condition”.
Sydney health worker Christine described the challenges of working in a system with inaccessible heath data.
“You are not necessarily going to be in your (local) area when you get sick, and the treating doctor would not have access to your records,” she said.
Leanne Wells, CEO of the Consumers Health Forum, a body which supports the opt out system, said “For healthy people, having instant access to personal health information – which is rapidly expanding given the growth in number and capability of health apps – offers an important stimulus to maintain a healthy lifestyle.”
However, many consumers believe the potential value in MHR is outweighed by the risk of privacy and data breaches, with 20,000 people opting out of the system in just one week.
The MHR website has experienced significant delays and crashes, with some consumers discovering they already had a record in the system.
Phone operators assisting consumers experiencing difficulty opting out or deleting existing records have warned of long wait times to get help, and advised trying to access the system after the initial interest dies down.
Shadow Minister for Health, Catherine King says “There has been significant and growing community concern about the My Health Record since the beginning of the opt-out period.
“The Government has failed to effectively communicate with the public about what the My Health Record is and the potential benefits it could bring,” she said.
Other critics of the system are concerned with the privacy issues and cyber security, and of provisions in the legislation potentially allowing data to be accessed by a range of agencies.
Leanne Wells warned “We believe Section 70 of the My Health Records Act 2012 needs to be tightened so that access to medical records for non-healthcare reasons is governed by law and judicial oversight and not left to be subject to agency policy.”
Fears of privacy breaches have been exacerbated by news of hacking and data breaches in the electronic health records of patients in other countries, including Singapore and the United States.
Shadow Minister for Digital Economy, Ed Husic, said he will opt out if government doesn’t improve the legislation.
“People are entirely within their right to opt out if they think this isn’t a good deal for them,” he said.
Another voice of concern belongs to Dr Cassandra Goldie, CEO of the Australian Council of Social Services, who said “We need to see legislative protection of My Health Record information, so that it cannot be accessed by third parties without a person’s express permission or by court order or subpoena”.
Dr Goldie said the Australian Council of Social Services “has expressed serious concerns about the lack of adequate privacy protection in the legislation for the My Health Record system”.
The system also causes concerns for teenagers who don’t want their parents to have access to their data.
There are options for those aged 14-18 to keep their medical records confidential under the MHR scheme, but teens need to either change their settings themselves, or ask their doctors not to include certain data.
Catherine King says the government has failed to explain to people how their rights will be respected, or their privacy protected.
“This approach has fuelled suspicion – which could be why tens of thousands of people rushed to opt out in the first week,” she said.
While acknowledging the benefits of My Health Record, Cr Prof Phelps says “Confidentiality is at the core of our ability to do our job effectively.
“In Queensland abortion is still illegal so people who are seeking abortions are concerned that information might get into the hands of law enforcement agencies,” she said.
However current AMA President Dr Tony Bartone commented “We’ve been assured that this is the best level of possible protection that could be implemented, and we’ve got to go with that.”
Since this story was written the Minister for Health, Greg Hunt has announced the My Health Record legislation will be amended so that records will not be able to be accessed by a third party agency without a court order.