In August 2016, My Health Record (MyHR) – the Australian government’s digital health record system – was criticized by Dr Bernard Robertson-Dunn, chairman of the health committee of the Australian Privacy Foundation (APF), an NGO which protects the privacy rights of Australians.
MyHR is “useless” and “is is putting patient data at risk”, Dr said.
A spokesperson for the Australian Government Department of Health has agreed to answer questions from H&TI. He told us more about the current use of the device, its actual costs, their data security policy and planned changes to improve the system.
The Basics (My Health Record)
What is the purpose of MyHR?
My Health Record is Australia’s national digital health record system that allows an individual’s important health information such as their past medical history, current medications, immunizations, allergies and hospital discharge summaries to be shared securely online by the individual and registered healthcare providers involved in their care (it was launched on 1 July 2012). Having a My Health Record can be beneficial if an individual is being cared for by multiple healthcare providers, or has ongoing treatment for chronic or complex conditions.
Having a My Health Record also means that individuals don’t need to worry about having to remember and repeat their medical history. It can also help in a medical emergency. Healthcare providers such as those who work in hospitals connected to the My Health Record can view information such as medical conditions, allergies, current medications and advance care plans to provide the appropriate treatment quickly.
Who can access the data available on MyHR?
Healthcare organizations such as general practices, public and private hospitals, medical specialists, pharmacies and allied health providers can all view and upload clinical documents to an individual’s My Health Record as long as they have conforming software. Individuals can also view and upload health information to their My Health Record.
Under the My Health Records Act 2012 (the Act), health information in a My Health Record may be collected, used and disclosed “for any purpose” with the consent of the healthcare recipient. One of the functions of the My Health Record System Operator is “to prepare and provide de-identified data for research and public health purposes.” Before these provisions of the Act can be implemented, a framework for secondary use of My Health Record system data must be established.
There is currently no secondary use of My Health Record data.
The government responds to critics of Dr. Robertson-Dunn
According to Dr Bernard Robertson-Dunn, MyHR is “putting patient data at risk”.
The government takes the privacy and security of individuals’ personal information very seriously. The My Health Record system uses bank-strength security features including strong encryption and firewalls, secure logins and audit trails.
The system operates in accordance with Australian Government Security Standards and undergoes regular independent security compliance and vulnerability assessments. These standards are regularly updated to address emerging cyber-threats.
In addition to the technical system controls in place, there are a range of criminal and civil penalties set out in the My Health Records Act 2012, which provide the ability to apply sanctions to those who deliberately misuse the health information of an individual.
The Australian Department of Health revealed that it “had inadvertently committed a potentially serious breach of the Privacy Act by (…) publishing supposedly anonymous Medicare and pharmaceutical claims data involving GPs and three million of their patients”, The Saturday Paper reported on 8 October (2016).
The chairman of the health committee of the APF said the majority of Australians have not registered for My Health Record, and most registered users are not using it. How many Australian citizens really use MyHR?
There are currently over 4.2 million Australians or about 18 per cent of Australia’s population with a My Health Record. As at 18 September 2016, these individuals had uploaded over 111,000 documents to the My Health Record system, including almost 70,000 personal health summaries, over 30,000 personal health notes, and almost 12,000 advance care directive custodian details and/or advance care planning documents.
There are over 9,000 healthcare provider organizations registered with the system. As at 18 September 2016, these healthcare provider organizations had uploaded over 1 million clinical documents to the My Health Record system, including almost 314,000 shared health summaries, over 533,000 hospital discharge summaries, 108,000 event summaries, and over 25,000 specialist letters.
“The government has never told us how [MyHR] has improved health care or reduced health costs,” Dr Robertson-Dunn said. How do you respond to this criticism?
The My Health Record system can improve the efficiency and effectiveness of the Australian healthcare system and has the potential to reduce the cost of healthcare in Australia by:
- Increasing the availability and quality of health information (that improves clinical decision-making);
- Reducing the number of adverse heath events;
- Reducing avoidable hospital admissions;
- Reducing duplication of medical tests;
- Improving the coordination and quality of healthcare for patients.
It can also help make healthcare provider organizations more efficient by reducing the need for paper, for faxing referrals to other healthcare providers such as specialists, and for chasing up an individual’s medical history.
[The health department didn’t provide any figure on that point.]
How much does it cost? “It’s costing over AU$400 million (€ 271 M) every year”, Dr Robertson-Dunn said. Is that correct?
No. As part of its 2015-16 Budget Measure – “My Health Record: A New Direction for Electronic Health Records in Australia”, the Australian Government announced funding of $485.1 million (€ 208,5 M) for the improved and continued operation of the My Health Record, for strengthened national digital health governance arrangements, and for trials of participation arrangements for individuals, including an opt-out system. This includes three years funding to operate and continue to improve the system.
He also said that the MyHR is not practical. “The data is contained mostly in PDFs, which are documents. It’s difficult to search them (…) [and MyHR] needs to be complete. That means the notes and data from every visit to a doctor, the results of every diagnostic test (…)”
There are a small number of PDF documents in the My Health Record system, including radiology reports, advance care planning documents and a small percentage of discharge summaries. The majority of documents are not PDF documents including shared health summaries, event summaries, prescription and dispense documents. We are continuing to work with healthcare providers and industry to improve the usability of the system, including the provision of summary views of the information.
The My Health Record is an electronic summary of health information that is provided by healthcare providers and individuals. It is not a comprehensive medical record and does not replace the medical records held by healthcare providers, nor does it change the current obligations of healthcare providers to maintain their own detailed and accurate clinical records for their patients.
It provides supplementary health information about the individual that the healthcare provider may not have otherwise had access to, for example that they had recently been discharged from a hospital in another state or been to see another doctor because they couldn’t get in to see their usual doctor.
Currently, in Australia in any one week, one in three Australian Gps will see a patient for whom they have little or no information at all. More than one in five GPs face this situation every day. With My Health Record, a healthcare provider finding themselves in this situation will have access to at least some information about their patient.
Are you planning some changes to improve the efficiency of MyHR?
There have been, and will continue to be, a range of enhancements to the My Health Record system to improve usability for consumers as well as healthcare providers.
During 2015-16, major changes were made to the My Health Record system. These include:
- renaming of the system from the Personally Controlled Electronic Health Record to My Health Record.
- usability improvements to make it easier for people to set up their record and set access controls if they wish.
- the ability for people to upload a copy of their advance care planning documents to their My Health Record.
- changes to support the opt-out participation trials currently underway in Northern Queensland and the Nepean Blue Mountains region of New South Wales including the introduction of a separately hosted online channel for trial area participants to exercise their choice not to have a My Health Record automatically created for them.
- an enhanced and contemporary look and feel including for those who access the My Health Record directly through a smartphone or tablet. The system will automatically detect when it is accessed through a mobile device and deliver the information in a form and style that matches that device.
- implementation of the technical changes to enable third party mobile applications to gain access to a person’s health information in the My Health Record system and provide a view of the My Health Record or other Health related services, subject to their consent.
