Are you in or out of My Health Record?

This year you will have a My Health Record automatically created by the Australian Government.

If you don’t want a record created for you, you have until 15 November 2018 to opt out by visiting the My Health Record website or by calling 1800 723 471 for phone based assistance.

My Health Record will be of value to people living with Parkinson’s who are likely to have regular interactions with GPs, specialists and hospital and clinic staff. Their records will include information like diagnoses, current medications (so allergic reactions and drug interactions can be avoided), referrals, next of kin, and organ donation information.

All of this data will be immediately available to doctors and medical staff, regardless of where people living with Parkinson’s present for treatment. You can choose to opt out, but if a My Health Record is created for you then doctors will automatically upload your health information unless you specifically ask them not to.

Access to your My Health Record is limited to registered healthcare providers and people who are authorised to provide you with medical care. Private health insurers and other organisations will not have access.

You can opt out of My Health Record by:
• Visiting the web site www.myhealthrecord.gov.au and following the instructions on how to opt out.
• Managing the process by phone. Call 1800 723 471
• Completing a paper form. These forms are available from your local Australia Post office.

Video: All you need to know about My Health Record in 2018

Other uses of My Health Record data

Data collected through initiatives like My Health Record may also have value in large scale
research projects.

One example was reported in the international medical journal Cell. It described how researchers in New York had used a computer algorithm to review the records of three million
patients at large hospitals and capture 7.4 familial relationships – just from the next of kin
data in online health records. (Identification of individual patients was removed).

This enabled the mapping of family trees spanning multiple generations, allowing researchers to link information on relatives with patients’ hospital. This enabled them to track how diseases may be inherited.