Australians have but a few days left to choose for themselves whether or not they want to have an electronic health record created for them. The opt-out deadline approaches amidst calls for a further extension by the Senate Inquiry report, the Australian Privacy Foundation, opposition parties, clinicians and lawyers.
To top it off, it was reported that the Director of Privacy at the agency responsible for implementing the My Health Record system, Nicole Hunt, had resigned. This adds to the unease already surrounding privacy protection and lack of time for Australians to understand the pros and cons of the proposed electronic health system.
Following a wave of publicly expressed concerns and a report by the Senate Committee, the Australian Government has proposed tightening some aspects the My Health Record system’s privacy framework, but these will not be passed before the opt-out deadline on 15 November.
…the head of the agency implementing My Health Record is the same man responsible for the UK’s controversial electronic health record system…
The fact that the head of the agency implementing My Health Record is the same man responsible for the UK’s controversial electronic health record system which sold patient data to drug and insurance companies, did little to inspire confidence in patient privacy offered by the Australian system.
Given the short opt-out period, it is likely that many, especially the vulnerable and socially disadvantaged, may not have the opportunity to thoroughly understand and consider the system and their options.
Australian hepatitis organisations are concerned that many people affected by hepatitis B and hepatitis C may not know about My Health Record, how it works and the pros and cons for the management of their health, including privacy issues which may have implications for people concerned about stigma and discrimination.
In an information paper to the community, Hepatitis Australia explains the basics of My Health Record, the difference between the original opt-in and the new opt-out systems, the benefits and concerns. The paper talked about responses from the community and recommendations for improvements to the system. Perhaps most useful is its outline of the My Health Record privacy framework – reproduced below:
Which health care providers can look at My Health Record?
The system is designed to provide health care professionals and services such as pathology labs and pharmacies with all the information they need to provide you with appropriate care.
Your My Health Record will be set up to give all health care providers and all health care organisations unrestricted access to your personal health information. This includes your GP, hospital staff, specialists, other healthcare professionals, pharmacies and pathology labs.
Can information be added to my record without my consent?
Yes – your My Health Record will be set up to allow information to be added without your consent. This may include clinical information, prescription details or pathology test results.
Can I control access to My Health Record?
Yes – you can choose to limit access to specific documents (using a document access code) or to the whole of your My Health Record (using a record access code). You can also monitor who looks at your My Health Record. In an emergency, or where your or another person’s safety is a concern, health workers can ask for any access restrictions to be lifted for five days. For further information about this go to the Government website.
Can the information in My Health Record be used by researchers?
Yes – by default it can be used for research, policy and planning purposes. Use of identified data will be subject to strict ethics approvals.
If you don’t want your health information shared for public health and research purposes, you will need to:
- Log in to your My Health Record through www.my.gov.au
- Click the ‘Profile and Settings’ tab.
- Scroll down until you see the ‘Secondary uses of data section’.
- Click the button that says ‘Do not participate’.
Can the Police or other Government agencies look any information My Health Record?
There were concerns that the current law allows for information on individual My Health Records to be given to law enforcement agencies and other Government bodies without consent. In response the Australian Government has agreed to put forward legislation to prevent any information being provided to law enforcement agencies and other Government bodies unless there is a court/coronial or similar order requiring it. This proposed change is not yet in place.
What happens to personal health information if a My Health Record is cancelled?
There were concerns that the current law allows cancelled My Health Records to be retained for 30 years. In response, the Australian Government has agreed to change the legislation to ensure that if an individual chooses to cancel their record, it will be permanently deleted. This proposed change is not yet in place.