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Advocating for the best possible My Health Record

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I recently had a private meeting with Health Minister Greg Hunt in Melbourne to raise with him growing concerns being raised by AMA members, other doctors, security experts, politicians, patients, and the media about privacy and the My Health Record.

The AMA has a long history of supporting and promoting an efficient and secure electronic health record, but we have also emphasised that it must be the right electronic health record – one that meets clinical expectations, one that respects and protects patient privacy, and one that is acceptable and useful to doctors and patients.

Our priority has always been on ensuring that the clinical expectations of the My Health Record were achieved. However, the public and political debate around privacy and security of the My Health Record is extremely worrying, and must be resolved satisfactorily, or it could undermine the clinical objectives and benefits for doctors and patients, derailing the whole project for many years to come.

The AMA had to act, and we did.

At the National Press Club in July, I declared that I would do ‘whatever it takes’ to force the Government to act to ensure the privacy and confidentiality of the My Health Record and preserve the sanctity of the doctor-patient relationship. Only moments after the Press Club, I spoke to the Minister and arranged the now widely-reported meeting.

One of the major concerns, among others, is the provisions in the My Health Record Act 2012 that permit the My Health Record System Operator to use or disclose patient data to an enforcement body without a court/tribunal order.

So, backed by the AMA Federal Council, I took the following demands to Minister Hunt at our meeting:

  1. Amend the My Health Record Act 2012 to ensure sensitive health data is not disclosed without a warrant or court order.
  2. Introduce amendments so that if people choose to cancel their record, even after they opt-out, they will not end up with a permanent My Health Record.
  3. Develop and rollout a fully resourced, public information campaign to ensure all Australians are aware of the My Health Record and have access to all the information they need to make an informed choice.
  4. Extend the opt-out period to give people more time to consider that choice.

The Minister and the Prime Minister agreed to all these demands. Minister Hunt immediately issued a media release to that effect following our meeting.

This is a significant victory for AMA advocacy, but clearly there is still a long way to go.

The My Health Record is not new. It was formerly called the Personally Controlled Electronic Health Record and has been available and used since 2012. It is a patient’s own record – a summary of dis-aggregated information from many silos in the health system in the one place under their control.

It promises greater efficiencies in recording, storing, and sharing vital health information. It alone is not the solution, but it will be an enabler to wider platform improvement, allowing more innovation in electronic health records, communication, and information sharing. God knows, it might even spell the end of the fax machine in our health system.

As practitioners, we all know that if health care was simple and predictable, if a patient only ever needed clinical treatment from a single, regular clinician, then we would not need a My Health Record at all. The patient’s doctor would have all clinical information in their software.

But patients’ lives are more complex, dynamic, and unpredictable. Our health system is split across jurisdictions, across primary and acute settings, across private and public systems.

For me, as a GP, coordinating patient care for those with chronic and complex health conditions is one of the most frustrating aspects of the Australian health care system. Where it fails, as it often does, it is to the detriment of patient care.

Uncoordinated care is also wasteful. Tests are unnecessarily duplicated because test results are not always available to the other doctors involved in the care of the same patient. There is a real and immediate need to push for a reduction in medical harm due to things like polypharmacy and avoidable anaphylaxis.

We must solve all the problems and address all the concerns. Then we must push on to make a workable and safe electronic health record a reality, which is enthusiastically embraced. Of course, the time and effort placed on the nominated doctors, especially during the implementation, will be significant and must be recognised by the Government. This will be the focus of significant AMA advocacy going forward. Without this, the implementation will struggle significantly.

There is no doubt that more issues and concerns will arise. Some will be about the legislation and privacy. Some will be about the clinical benefits, or less than perfect interoperability. Some will be a matter for consumers as they decide whether to opt-out. Others will be for other peak bodies in the social services, security, privacy sectors, or other fields to consider.

The AMA stands ready to continue to work constructively to deliver a strong and effective electronic health record that works to improve the quality of patient care and coordination in the Australian health system.

Thank you to all of you who have provided feedback to date. I encourage you to continue to do so as we await the full and formal response from the Government on the next steps for the My Health Record.

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