What is My Health Record and why are people saying you should opt out?

theauspolchronicles:

theauspolchronicles:

• MyHealthRecord is an online medical record database designed to help doctors access health records even if they’ve never treated you before. The idea is to help reduce medication mismanagement.
• It was originally launched under the name of Personally Controlled Electronic Health Record.
• PCHR had many technical issues and a low opt-in rate and as such wasn’t used much by doctors. My Health Record is meant to have better engagement and be a more helpful version of the idea.
• What’s the concern about it? Well, people are worried about a breach of security. The government is currently working to put greater restrictions for data accessible via the mobile app.
• There was a similar concept in Britain that had issues with data being sold to drug and insurance companies.
• The My Health Record website says that data “cannot be used solely for commercial and non-health-related purposes” and that “solely” is a semantic point of contention for some, saying that could be used as a loophole for a commercial company that works for Australian healthcare services. Naturally the government says the data will not be sold. There are options for what your data can be used for in secondary purposes, like research.
• The previous system, PCHR, was not breached in the 5 years of operating though.
• You can put a PIN on certain records and have notifications when they are being accessed. Personal safeguards can be overridden in case of emergency and accessed by police though.
• If you’d like to opt-out of the My Health Record you can do here at their website myhealthrecord.gov.au. You will have until October 15th to do this or you will automatically be signed up for it.

ADDITIONAL INFORMATION:

• Section 70 of the My Health Record Act empowers the Australian Digital Health Agency, to disclose patients’ health information to police, courts, tribunals and the Australian Taxation Office for various reasons including “protecting public revenue” (whatever that means?) 
• I am finding pretty much no information about why the ATO would access your medical records or how that’ll affect you but it is part of the MyGov ecosystem of Government websites and thus is part of the same system as the ATO and Centrelink.
• Both Malcolm Turnbull and Health Minister Greg Hunt have said that information won’t be disclosed without a court order/warrant but the legislation doesn’t actually demand that as part of its operation
• Law enforcement only needs to have a “reasonable belief” that a person’s data could be “reasonably necessary to prevent, detect, investigate or prosecute a criminal offence” for them to access the data.
  
• MHR is backed by several peak medical bodies such as: the Australian Medical Association, Royal College of Australian GPs and the Pharmacy Guild of Australia.
• On the subject of those with HIV/AIDS: the Australian Federation of AIDS Organisations (AFAO) and The National Association of People with HIV Australia (NAPWHA) have both produced pdf fact sheets you can find here and here. They outline both the concerns and benefits of the program such as: 

“People with or affected by blood borne viruses and sexually transmitted infections or communities where
legislative barriers still affect their health, may want to further explore the implications of data sharing
around my health records.” – AFAO

“A central database of an individual’s health information means your MHR can be accessed
anywhere, anytime by doctors, specialists and hospitals — which is particularly useful for people
with HIV who are in the care of multiple healthcare providers. In an emergency situation,
healthcare providers will have instant access to a person’s medical history and be better able to
manage a patient’s care. When you see a new doctor or healthcare provider, a list of medicines,
chronic condition details and the results of recent tests will be instantly available to them.” – NAPWHA

• There’s concern that a breach of privacy could lead to an increase in risk of prosecution for marginalized groups such as drug users and sex workers, as well as unwanted revealing of HIV status.
• The benefits of My Health Record are especially helpful for people:
• who have complex health conditions
• take multiple prescription medicines
• get treatment from various doctors and other health professionals
• live in remote and rural areas
• are elderly
• don’t speak English very well
• have difficulty remembering and/or communicating all the details of their medical story
• Consumers of Mental Health WA, the Victorian Mental Illness Awareness Council and the NSW peak organisation Being, all warn that there is a risk for people to have their mental health issues revealed (and subsequent societal discrimination) if information is accessed, especially young people whose parents will have access to their medical information.
• The same concerns are mirrored by critics saying a breach of privacy could out LGBTQIA+ Australians
• There are options for adding extra controls and restrictions on your data, and limiting access to certain files to specific healthcare providers on the website.
• The My Health Record information will be kept for 30 years after the death of the person (or if that is unknown: 130 years after their birth).
• If you find that you aren’t concerned about these issues and have faith in the security of the system and can benefit from MHR then simply do nothing. If you have concerns then opting out can be done before October 15th via the MyHealthRecord website.