Are you better or worse off with a My Health Record? What are the arguments for and against, and how do you opt in or out?
Recently, the news has been full of controversy. One contentious issue is the changes to My Health Record, a national digital medical record for Australian residents, including children.
This medical record system has actually been around for a few years. However it was previously run on an opt-in basis, where one was set up if you agreed to it. About six million people, or a quarter of the Australian population, have so far signed up. These figures have been boosted by incentive payments made to GPs and clinics.
My Health Record offers control over privacy settings, with an option to give each healthcare provider its own access PIN. However, the records have a default privacy ‘off’ setting, in a nudge towards the lower-privacy route. The most recent figures show that less then 0.2%t of users have so far set up PIN codes.
In a radical change costing about two billion dollars to implement, My Health Record is currently being transformed into an opt-out program. This means that a record will be created for everyone who does not actively say no. The window of three months during which people can do this has been extended an extra month to November 15th 2018.
Opting out can be done online, by calling 1800 723 471, or by using print forms at post offices. Parents can opt out other family members such as children. Using the phone option may be simplest, given that some online opt-out attempts have been unsuccessful. Online opting out has been particularly difficult for people who are vision impaired.
Some people are finding to their surprise that they already have a My Health Record created without their knowledge. Many of these live in the Blue Mountains and North Queensland regions, where a trial of an opt-out system in 2016 resulted in less than 2% opting out. This compares with a recent survey by finder.com.au indicating that 26% are planning to do so.
Some others are having records created for them, and are being denied an opt-out choice. These include chronically ill people at the Federal Government’s health care homes. Former Australian Medical Association (AMA) president Dr. Kerryn Phelps described this arrangement as unethical, and says she believes that coercion could later be applied to other groups too.
If a record is set up, the federal minister for health, Greg Hunt, has reassured the public that they can request for it to be deleted permanently. However, data experts have warned that it may be impossible to verify the complete removal of one’s health data, due to the fact that it is likely to be stored on archival backups.
For those without an existing record who do opt out, it is possible to later opt in at any time, allowing a wait-and-see approach to people who presently feel uncomfortable with going ahead.
The likely benefits
Several arguments have been raised in favour of having a My Health Record. It brings health information together in one place, and represents a shift towards a greater digitisation of health information. This trend is seen by many as inevitable, and some feel that Australia should embrace it sooner rather than later.
Crunching detailed national data could be useful in providing early detection of healthcare-related trends, such as identifying cancer clusters, spotting harmful side-effects to drugs, and seeing more clearly how location affects health outcomes.
Sometimes, especially in an emergency, speed in accessing medical details can count, and a digital record may help with this. People with complex medical issues, especially involving multiple health professionals, may benefit from having a My Health Record. The same could be said for people who are elderly, who have dementia, or for separated families.
In a worst-case scenario, not having a My Health Record could require having to repeat medical tests if earlier results are somehow not accessible.
My Health Record has the support of a number of medical and health bodies including the AMA, National Aboriginal Community Controlled Health Organisation, and the Consumers Health Forum.
Concerns about My Health Record primarily revolve around the issue of privacy. There has been critical media coverage by the ABC, The Guardian, and the Sydney Morning Herald, to name a few.
While Greg Hunt has offered an assurance that legislation will be passed to better protect My Health Record privacy, no timeframe has been given. Its successful passage cannot be 100% guaranteed. These laws are intended to prevent data being released to the police, Centrelink, and other government agencies unless a warrant has been obtained.
Online health data is extremely valuable. In July 2018, Singapore’s digital health records were hacked, exposing the details of 1.5 million people. Head of the health fund NIB, Mark Fitzgibbon, has stated that he hopes the insurer will be able to obtain permission from its customers to access their data. This could lead to price discrimination.
Data on the record will be an online summary rather than a full clinical history. It may be incomplete, depending on what has been uploaded.
The scheme in its new opt-out form is being run by Tim Kelsey. He was the executive who ran the very similar UK initiative ‘care.data’, that was discontinued in 2016 amid a controversy around confidentiality.
Make a decision
Whether or not to have a My Health Record is up to the individual. Above all, it is important to think it through, weigh up the issues, and come to a decision, rather than be passive and have the choice made for you.
My Health Record site www.myhealthrecord.gov.au
My Health Record petition for a change to opt-in www.change.org/p/greg-hunt-mp-make-my-health-record-opt-in
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