My Health Record in a nutshell

  1. My Health Record is a partial summary of health care treatment received by a patient, it is not a record of a patent’s health status, or an electronic Medical Record to be used by healthcare workers.
  2. My Health Record is not to be relied on for primary healthcare. A patient needs to work with their  GP to put data in. That data usually comes from a GP’s own electronic Medical Record systems.
  3. It can contain (if the patient and/or their GP puts them there) a Shared Health Summary and a Personal Health Summary. These may be useful in times of emergency or when seeing a new health care professional. But the GP and patient must maintain this information otherwise it may become out of date and/or inaccurate.
  4. The Patient can hide or delete documents and information making the system unreliable and potentially unsafe for clinical use. The patient cannot hide their Shared Health Summary or Personal Health Summary
  5. The government’s oft repeated statement “My Health Record is a secure online summary of your health information. You can control what goes into it, and who is allowed to access it.” is an exaggeration and is misleading. It contains far more than a summary of your treatment (it includes Medicare data, discharge summaries, test results and, potentially multiple event summaries) and you have far less control than she implies.
  6. My Health Record was originally released in 2012, by law was opt-in, voluntary and you were asked to consent to have your health data collected and stored when you registered. Very few people and/or healthcare professionals used it, in spite of over $1billion having been spent on it.
  7. After a review in 2013 (The Royle Review) when it was asserted that GP’s were not using the system because very few people had a My Health Record (in spite of it not being designed for them) it was proposed that the system be made opt-out – i.e. everyone who did not object, would be given a My Health Record.
  8. The Royle review confirmed that the system is a summary system. Unfortunately a system that contains at least four different types of summary stops being a summary system and becomes a collection of unrelated documents.
  9. The law was changed in 2016 in order to enable people to be given a health record. The big obstacle was the need to obtain consent – so this was removed. i.e. the law does not require you to give your consent to having your health data collected and stored when – but you do still need to register
  10. Two trials were conducted in two regions where My Health Records were created for residents. The residents were permitted to opt-out. Because consent is now no longer required by law, even if you do not see your GP and create either a Shared Health Summary or a Personal Health Summary, other data such as Medicare claims, Pharmaceutical Benefits data and Discharge data will be added to your My Health Record. So every time you go to a GP, a specialist, or a Hospital it will be recorded in your My Health Record. It is possible to stop some of these things being added or control who can see them, but it is not easy.
  11. The Health Minister, with the agreement of COAG health ministers, has decided to make the whole system opt-out.
  12. That means everyone in Australia will be registered for a health record and their health data may collected, without their consent and be used for purposes other than their healthcare.
  13. Copies of all their health information will be stored in a large, Federal Government owned and accessible database where data can be used for purposes other than which it was gathered and can be matched against other government databases. It will have cost over $1.5billion so far and it is estimated that the cost to maintain it and the bureaucracy that supports it is over $400million per year.
  14. So far the government has not provided figures that say how many times a My Health Record has been downloaded and used for healthcare purposes or how much money it has saved from the health budget.
  15. The Government is very keen to increase the sharing of personal data. The ABS has stated specifically that it wants to link with health data and the ATO wants “increased sharing and use of personal data held by Government”
  16. The big questions are:

  • The ABS has conducted a census where the data is held as securely as possible but has been found wanting. The Department of Health is trying to gather everyone’s health data and to make access to it as easy as possible. Why?
  • Do we trust the Department of Health enough to let them do it?
  • Why is so much money being spent on a system that seems to have such little value?
  • Why is Australian’s health data being collected without their consent and put into a government owned and controlled data base attached to the internet?
  • Why is the government having to pay GPs to upload patient data?
  • Why is the Federal government, who has no direct role to play in the healthcare of Australians, running such a system, when there are far simpler, cheaper and safer ways of providing access to existing health data in their GP’s electronic Medical Record systems, if they require it.