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Some factors to consider

SECURITY SETTINGS AND PRIVACY

If you have concerns about the security of your information, increasing the security restrictions on your account may be enough to satisfy you. The security settings allow restrictions on which individuals (such as family members) can see your information, and what information your healthcare providers can access, and more. For example, you may not want your pharmacist to view information about a mental health condition. You also have the option to lock individual documents held on the system, so information you feel is sensitive can be restricted. Setting a passcode on these documents means you can control who sees them, and when.

ADHA: Set privacy and security controls >

You can also ask your healthcare provider not to upload particular documents to your record. Choosing to use My Health Record with a pseudonym (or false name) is another way of protecting your privacy.

ADHA: Pseudonym FAQs >

My Health Record keeps a track of when your record has been accessed, so you can view that any time you log in. You can also set up an alert to notify you when anyone accesses your Record.

ADHA: See who has viewed my record >

Australian Information Commissioner: Managing your My Health Record >

Australian Information Commissioner: Protecting your personal information >

My Health Record Privacy Policy >

YOUR ABILITY TO MAINTAIN AN ONLINE RECORD

Each individual is responsible for setting the level of security on their Record, and ensuring that information on your Record is accurate and up to date. This information includes your contact details, and ensuring that you agree with the contents of information uploaded by others. Anyone who is not able to do this may wish to consider whether this is a risk to them. However, if you don’t have internet access, you can call the My Health Record helpline on 1800 723 471 to access your information. Helpline staff can tell you which documents are in your My Health Record but not what each document contains.

YOUNG PEOPLE

As a protection for the privacy of young people, parents are currently not able to access the Medicare information of a child over the age of 14. However, a parent is able to access their child’s My Health Record until the child turns 18 unless the child chooses to take control of their own record. Young people can take control of their own record from the age of 14.

Follow the links below for some further information that young people and their carers may wish to read.

The Conversation: Freezing out the folks >

ADHA: Take control of your Record >

DOMESTIC AND FAMILY VIOLENCE

People vulnerable to domestic and family violence, who wish to keep their location details secure, may need to consider whether having a My Health Record presents a risk to them. You may choose to use My Health Record anonymously, or using a pseudonym.

ADHA: Pseudonym FAQs >

Women’s Legal Service on concerns about My Health Record >

ADHA: Family and domestic violence >

SENSITIVE HEALTH ISSUES OR LIFE CIRCUMSTANCES

If you have a health issue or life circumstance that you consider sensitive, you may wish to investigate the potential implications of sharing your health information via My Health Record. The risk of stigma and discrimination by health care workers may be a worry for some people, such as those carrying a blood borne virus, or those who have been affected by the justice system. The potential of a data breach that exposes personal information is also a serious concern for some people.

Sensitive issues or circumstances may include:

  • sexual health
  • mental health
  • degenerative disease
  • health care worker
  • drug use
  • criminal record
  • blood borne virus
  • sex worker
  • lesbian, gay, bisexual, transgender, or intersex
  • pregnancy, or termination of pregnancy

ABC News: Concerns My Health Record could expose sex workers, people living with HIV to prosecution >

GOVERNMENT ACCESS TO YOUR RECORDS

There are some circumstances in which other government agencies can access your My Health Record. “There are limited other circumstances in which your information may be collected, used and disclosed under the My Health Records Act. These limited circumstances include the disclosure to courts and tribunals, for the purposes of coroner’s investigations, and for law enforcement purposes.” – My Health Record Privacy Policy

My Health Record privacy policy >

SECONDARY USE OF DATA

From 2020, the Australian government will be making de-identified data from My Health Record available for research, policy and planning purposes. This usage will be governed by a Framework, which describes the governance and processes to be implemented prior to data being released. The Framework will be reviewed regularly, with the first review to take place within 2 years of the first data release.
People with a My Health Record can choose to not have their health data shared by using the privacy settings within My Health Record.

ADHA: Secondary use of data >

THOSE MOST LIKELY TO BENEFIT

My Health Record will give your healthcare provider a clear and complete record of your tests, medicines, and treatments, without you having to record this yourself, or communicate it to your provider. This could be particularly helpful to people who:

  • Are elderly
  • Have communication difficulties
  • Have English as a second language
  • Have cognitive or memory difficulties
  • Have severe allergies or other conditions
  • Take multiple medications
  • Have complex health conditions
  • See multiple healthcare providers
  • Live in a rural or remote area

A central record of your medical history means that you do not need to be responsible for remembering all of your health information, and your history is available to health professionals in a medical emergency.

National Rural Health Alliance My Health Record information >

ADHA: The benefits of a My Health Record >

HOW BINDING IS MY DECISION?

If you opt out of My Health Record before the 15 November, you can then decide to opt in at a later date. If you do not opt out, but later decide that you no longer wish to have a My Health Record, you can choose to have your record deleted. Cancelling your record will permanently delete your My Health Record.

THERE IS SO MUCH INFORMATION ABOUT MY HEALTH RECORD. HOW CAN I BE SURE THAT WHAT I’M READING IS RELIABLE?

When assessing any information about health, some of the key questions to ask yourself are:

WHO WROTE THIS?

Reliable sources of information include government publications, peak bodies, and government-endorsed sites. If it is not clear who is running or funding the site you are looking at, visit the About Us or Contact Us pages to find out. If you still don’t find an answer there, consider looking for another site altogether. A reliable source of information will be transparent about their who they are and their sources of funding.

WHAT IS THE EVIDENCE FOR WHAT THEY ARE SAYING?

Information is likely to be trustworthy if is based on reputable research or official documents you can refer to. Testimonials or opinion are not reliable sources of health information.

IS IT AN OBJECTIVE VIEW?

Does the information seem balanced? If the site is published by a private company or special interest group, consider also seeking out another point of view to see if there are other ways to think about the issue.

IS IT UP TO DATE?

Some of the information about My Health Record has changed rapidly. Make sure the information you read to inform your decision has been published recently.

Health Direct: Assessing online information fact sheet >

Sydney Children’s Hospitals Network: Evaluating health information >

HAVING TROUBLE DECIPHERING THE TERMINOLOGY?

My Health Record glossary >