Why thousands are opting out of My Health Record
THERE has been a lot of confusion around the My Health Record scheme but time is running out for those who want to opt out.
People have until Thursday, November 15 to make their choice known, otherwise a record will be automatically created for them.
About six million people are already using the system and about 1.15 million have decided to opt out. About 300,000 have opted in and about 17 million are expected to be automatically enrolled once the deadline passes.
Since the opt out system was announced, a number of changes have been flagged to address concerns about who can see the data and to allow people to permanently delete their record.
However, these changes have not yet been passed in parliament.
The Labor Party, Australian Medical Association, Consumer Health Forum and independent MP for Wentworth Dr Kerryn Phelps are supportive of the changes but want the opt out period extended until the changes have passed parliament.
So far the Health Minister Greg Hunt has resisted calls for the deadline to be extended.
"It's arguably the safest system in the world, but most importantly, it's about giving people for the first time their own medical records when they need them," he told the Nine Network last week.
"It's a modern part of any health management system."
For those unsure of what to do, here are some things to consider.
PROTECTIONS HAVEN'T PASSED PARLIAMENT YET
Legislation that would ensure a patient's right to permanently delete their record and that police can only access someone's medical history with a court order, have not yet been passed. It won't be done before the November 15 deadline for opting out.
YOU SHOULD BE ABLE TO DELETE IT
The Government has promised to change the scheme so anyone who wants to delete their My Health Record at any time after November 15 can do so. The record will be deleted forever. Originally data would have been kept until 30 years after someone died, although organisations would not have been allowed to access it.
The new measure has been passed by the Lower House but not the Senate.
NOT ALL DATA IS AUTOMATICALLY UPLOADED
Two years of data from the Medicare Benefits Schedule, Pharmaceutical Benefits Scheme, Australian Immunisation Register and Australian Organ Donor Register will be automatically updated the first time your doctor looks at your record, unless you get in first and ask for it not to be downloaded.
Otherwise it's up to your doctor to upload the information and they will decide what records to put on your file.
You can also ask them not to upload sensitive data such as information on sexually transmitted diseases, abortion, mental illness or cosmetic surgery.
IT'S NOT JUST YOUR DOCTOR WHO CAN SEE YOUR DATA
Any registered health provider like your doctor, pharmacist, physiotherapist, nurse, diagnostic imaging and pathology practice, and other unidentified staff will be able to see your record.
It could also include your chiropractor, optometrist, osteopath, dentist, psychologist and Chinese medical practitioner because anyone registered with the Australian Health Practitioner Regulation Agency can access your information. As long you're a patient and they have the right software downloaded on their computer, they can look at your records.
But if you don't want your dentist poking around in your data, you can ensure this doesn't happen by placing restrictions on it.
You can go online and set a Record Access Code to only give certain healthcare professionals access and you can also restrict access to certain documents by setting a Limited Document Access Code.
However, these controls can be overridden in an emergency.
You can see who has looked at your data online by checking its access history. It won't show the individual doctor who looked at it but it will show the organisation, what date they looked at it and if documents were added or changed etc.
You can also set up an email or SMS alert to let you know when an organisation looks at your record for the first time.
Law enforcement agencies can only access a person's My Health Record with a warrant or court order (changes passed in Lower House).
The privacy commissioner recommends checking regularly for unexpected or unauthorised access. You can call the Australian Digital Health Agency (ADHA) on 1800 723 471 if you think something is wrong.
THE REALITY OF HACKING
Any online record is susceptible to hacking no matter how sophisticated the security system.
There will be regular security audits of My Health Record but any documents downloaded or created by a doctor could also be stored on their local IT system and the security of this will depend on their system.
YOUR DATA COULD BE USED FOR RESEARCH
The use of your data in a de-identified form (which means you'll be anonymous) for research will be allowed and is known as "secondary use".
You can tick a box to opt out if you don't want your data used this way.
Organisations including pharmaceutical companies in Australia and some overseas in certain circumstances will be able to apply to access the data.
Some people may also have their data used in an identified form but only if they agree first.
PRIVATE HEALTH FUNDS WON'T BE ABLE TO SEE IT
Proposed legislation will also stop private health insurers or other insurers from seeing the system's data for research or public health purposes, even when it has been de-identified.
COULD YOU BE IDENTIFIED?
Even when data is de-identified, there's still a chance you could be linked to the record.
There was already one case in 2016 when the Government released data on de-identified patients and Melbourne University IT researchers demonstrated it was possible to re-identify these people.
YOUR BOSS CAN'T REQUEST YOUR RECORDS
Proposed legislation will ensure your employer won't be able to ask to see your My Health Record and can't ask you to share information with them either.
PROTECTIONS FOR YOUNG PEOPLE
Currently a young person aged 14 and over can take control of their My Health Record at any time by removing their parents' access to their record.
But the Government will conduct a review looking into whether it is appropriate that parents have default access to the records of those aged 14 to 17.
PROTECTIONS FOR ABUSE VICTIMS
Proposed legislation will stop abusive former partners from accessing their child's record in cases of domestic violence.
PENALTIES TO BE INCREASED
Proposed legislation will increase penalties for people found guilty of improper use of My Health Record. They will face up to five years in jail, instead of two, and the maximum fine would more than double to $315,000.
THE BENEFITS OF MY HEALTH RECORD
Giving doctors access to your medical records could be lifesaving especially in emergency situations. It should also prevent unnecessary duplication of blood and other tests.
It will give doctors more complete information about your medical history and help them to better diagnose and provide treatment.
HOW TO OPT IN OR OUT?
If you are happy to have a health record created, you don't need to do anything as one will be automatically created. Or you can go online and opt in to the system and create any restrictions you want on your record.
If you want to opt out, there are three ways to do this:
Online: Go to www.myhealthrecord.gov.au
Phone: Call 1800 723 471
Mail: Complete a paper form and return it by mail. Forms will be available in 2385 rural and remote Australia Post outlets, through 146 Aboriginal Community Controlled Health Organisations and in 136 prisons.