The federal government has extended the period for opting out of the new My Health Record (MHR) system to January 31, 2019.
This system affects every one of us. If you don’t opt out, you will have a MHR automatically created for you by the Australian Digital Health Agency (ADHA).
Many people remain unaware of exactly what is proposed and unsure about whether they should opt out. The deadline to opt out has again been extended as the government proposes additional measures to protect the privacy of MHR data and bring harsher penalties for data misuse. Whether you should opt out will depend on your circumstances and your comfort with the privacy and security protections.
What is an MHR? It is an electronic repository of information uploaded by you, your doctors, and hospitals you visit such as patient summaries, test results, discharge summaries, medication lists, referral letters and letters from specialists.
You can add preferred emergency contacts, your regular GP and information about allergies.
Importantly, My Health Record is not intended to replace the records regularly kept by doctors and hospitals.
Critics of the system point out that a My Health Record will not necessarily be an up-to-date, comprehensive clinically-reliable medical record.
When you first access your MHR, you’ll be asked whether you want the past two years of your Medicare history and Pharmaceutical Benefits Scheme history as well as Australian Immunisation Register and Australian Organ Donor Register information uploaded.
Importantly, MHR is not intended to replace the records regularly kept by doctors and hospitals.
If your MHR is accessed by someone before you do, this information will be automatically uploaded but you can restrict access later.
If you have a MHR, you are providing “standing consent” for all healthcare organisations involved in your care to access and upload information to it.
This may include general practitioners, pharmacies, pathology labs, specialists, allied health professionals and hospitals.
Many people are concerned about privacy and misuse of information. The security of the MHR will be maintained by the government’s Australian Digital Health Agency.
Employers, prospective employers and insurance companies will not have access to your MHR.
You will be able to see which organisations, but not necessarily which individuals, have accessed or uploaded information to your MHR and can elect to receive email and text notifications.
You can ask practitioners not to upload certain information as well as restrict access and delete information after it has been uploaded.
The system allows you to apply special codes so only certain people can see certain documents. For example, if information about a sensitive mental health issue is uploaded you may restrict your dentist or physiotherapist from viewing it.
These codes can be overridden for approved healthcare provider organisations in an emergency.
Your MHR data can be de-identified (your personal details are not attached to it) and used for policy development and research. You can elect to prohibit this or opt in and opt out on a case-by-case basis.
The Australian Institute of Health and Welfare is the custodian of all secondary use of MHR data and applications for data will be assessed by a Data Governance Board.
Last month the Senate passed the My Health Records Amendment (Strengthening Privacy) Bill 2018. The bill hasn’t yet passed the House of Representatives.
Under the law as it stands, the ADHA may consider applications for access to your MHR by law enforcement agencies on a case-by-case basis.
The new bill proposes that no information from a person’s MHR be released without a judicial order.
Some argue that having a MHR gives you easier access to and more control over your health information than you currently have.
If you have trouble remembering your medications and recent test results and see multiple practitioners, it may be convenient to have a My Health Record.
Others point out that exercising control over that information requires you to spend time using and monitoring the system.
This is an issue you need to think about. Because it is an opt-out system, if you don’t, the decision will be made for you.
It is important to know that if you opt out now, you can opt in later. Details of how to opt out and more information about MHR is at myhealthrecord.gov.au.
You need a MyGov account to access your MHR but don’t need one to opt out.
Lucy Wilk is a senior associate, specialising in health and medical law at Catherine Henry Lawyers.
As published in the Newcastle Herald on 12 December 2018 here.
We have also commented on the extended opt-out date for my health record in our recent blog My Health Record: Opt-Out Period Extended.