It hasn’t been all smooth sailing for Australia’s most ambitious digital health information system, as Dr Karl Gruber (PhD) explains.
My Health Record is a nation-wide scheme that hopes to serve every Australian, providing quick and secure access to virtually every type of health-related information. It aims to be an online repository for everything related to a person’s health.
Today, according to official statistics, about 23 million My Health Records have been created and more than 2.5 billion documents are being stored in this system.
There are currently 187,000 documents uploaded by GPs and viewed by other approved users; 322,000 documents uploaded by public hospitals and viewed by other healthcare providers; and 271,000 documents uploaded by public hospitals and viewed by other approved users.
But, despite the impressive stats, not all GPs are on board and not all patients are happy or even aware that their information is on the system.
The vision
Launched more than nine years ago, My Health Record (MHR) is the Australian Digital Health Agency’s (ADHA) effort to centralise everyone’s health information into one online database. The system contains a wide range of health-related documents from patients, their healthcare providers and Medicare.
Documents can include a patient’s medical history, a list of medicines prescribed, currently and in the past, test results such as pathology tests, referral letters sent by doctors, and any other information relevant to a patient’s health.
The vision behind the database is to create a one-stop health hub that doctors and other healthcare providers can easily access to get up-to-date information about a patient’s health history. Ultimately, the goal is to help the patient get the best treatment possible.
The promised benefits of implementing this system include reducing instances of adverse drug events or duplicated services, enhancements of a patient’s ability to manage their own health information, and an improvement in the time it takes to gather a patient’s health information.
The Good
Dr Steve Hambleton currently acts as independent clinical adviser to the ADHA, providing clinical advice on the MHR. According to Dr Hambleton’s own experience, MHR can make a big and positive difference in the treatment of some patients.
He recalls an event involving his mother, who suffers from dementia, who one day developed chest pain and was taken to the hospital.
“When she got to the hospital, they would have said, ‘how are you?’ She would have said, ‘I’m fine’. And if they asked, ‘did you have any chest pains?’ she would have said ‘I’m fine’. She would not have been able to give a history and she certainly wouldn’t have been able to tell them anything about her past history,” Dr Hambleton said.
Luckily, this is not what happened, as all of his mother’s medical records were available to hospital staff, providing all the information they needed about her past medical history.
It is very likely that many other patients would have similar experiences, benefiting from having their health information online, ready for a health care provider to use it in a time of need.
The Bad
Despite good intentions, MHR is not everyone’s cup of tea. For some GPs the decision to avoid MHR is as simple as having no need for it. Some practices have already invested significant time and resources in their own medical software, which meets their every need. So why change?
For other GPs, the reason to opt-out from MHR goes deeper, into the heart of good medical practice.
Between July and October of 2018, MHR took an “opt-out” strategy, where all Australians were automatically enrolled in the system, and those who didn’t want to be had to “opt out” and actively request MHR to remove their information.
While this approach might make sense when your goal is to enrol as many participants as possible, there is a crucial element missing. According to one Perth-based GP, MHR fails a fundamental pillar of medical practice: informed consent. “I don’t use it because patients have not given their informed consent in the majority of cases,” he said. “It should have been more a patient-centred model rather than a blatant day grab central model.”
However, the “opt-out” strategy might have been a necessary evil.
“As a consumer advocate it can feel risky to be supportive of opt-out rather than opt-in strategies. However, the opt-in strategy was given a (very) long lead time with little result, whereas since the opt-in more than 22 million Australians now have a My Health Record,” says Pip Brennan, executive director of Health Consumers Council WA.
But among these vast number of records, it is likely that a significant number of Australians are unaware of their own record.
“Our best guess is that many people with My Health Records don’t realise they have one. There are impressive stats on the number of documents that are uploaded, but what this actually means for patient care is questionable,” Ms Brennan said.
Another issue raised by doctors is that MHR is not a comprehensive medical history, but a collection of key documents made since the date of creation of the record, and maybe only a summary is shared by your GP.
However, this may reflect the need to better understand what can go into MHR and from where. According to Dr Hambleton, whatever health documents are uploaded into MHR are available to subsequent health care providers and the owner to peruse. In the case of the record owner, they can even restrict or prevent access to it, as they see fit.
Security and privacy have also been raised as concerns. MHR keeps track of all access to your record, with all accessions being recorded in the record history and patients can get notifications via email or SMS whenever their record is viewed. However, while MHR is only accessible by a patient (and their nominated or authorised representative) and health care providers, it is not 100% clear who exactly is looking at your record.
“When I look at my health record, there are many interactions with a doctor I’ve never heard of who reviews pathology tests. It doesn’t paint a very clear picture of my health care team,” Ms Brennan said.
Dr Hambleton said there were strict penalties for privacy violations including up to five years’ jail and loss of registration.
Ms Brennan raised consumer concerns that notations such as a drug and alcohol history, a blood-borne virus, mental health diagnosis etc. could negatively impact the care they received. While she acknowledged that this was not the fault of MHR, “stigma is a very real concern and can’t be cured by technology.”
In this regard, Dr Hambleton says that details about drug or mental health issues would only come from GP-shared health summaries.
“The GP that shares the health summary is someone who knows the patient well and a GP will generally be very sensitive to what they share. Similarly, those who author discharge summaries are aware that the information will be shared with both the patient and the patients’ health care providers,” he said.
“I have discussed this with my mental health patients and explained that the only person authorised to look at a MHR is the person providing contemporaneous health care. That information has provided them with comfort.”
What this means in practice is that patients can and should discuss with their GPs who can have access to sensitive information. Patients should also be informed that, at any time, they can restrict or delete any of their records. However, sharing information such as a blood-borne virus is in the best interest of a patient’s care.
“Not knowing someone carries a blood-borne virus or who is immunosuppressed could be at substantial risk from something as simple as a shingles vaccine, which could be lethal,” Dr Hambleton said.
Overall, MHR was certainly a better alternative than paper-based records.
“With the current paper-based system, we have absolutely no idea when our record is being accessed. There is obvious potential for My Health Record to better protect privacy,” Ms Brennan added. Instead, with MHR, you have the option to manage your record, invite someone you trust to manage it and decide who has access to your documents.
There might be security risks, as with any complex system, and maybe the opt-out approach was a bit arbitrary but, at the end of the day, Australians now have total access to important information about their health, Ms Brennan said.
“Section 8.4.6 of the AMA’s good medical practice guidelines notes the importance of ‘Recognising patients’ right to access information contained in their medical records and facilitating that access.’ Arguably, My Health Record aims to do just that,” she said.
Work remains, however. For example, improving the way data is added to the record. Ms Brennan recalls her own experience trying to get a test result uploaded. “There was no box to tick to say I did want it on My Health Record. The sonographer told me to ask reception staff, but I was advised that it wasn’t possible,” she said.
Another important change involves aged care. Today, more than 1.2 million Australians live in aged care facilities, according to Australian Institute of Health and Welfare. Medical Forum asked various aged care facilities in WA about their use of MHR, and all of them had the same answer: they don’t use it.
This needs to change, Dr Hambleton said.
“You would be horrified by the number of medication errors that occur in transitions of care from residential aged care facilities to hospitals and back again,” he said. “The main reason for these errors involves multiple medication lists.
“There’s a list of the patient’s medications at the facility, another at the pharmacy that looks after the facility and there’s a third list that is in the software at the GP surgery. All three of those are often different and that is a recipe for chaos.”
Implementation of MHR into aged care facilities should avoid these medications errors and provide an accessible system to obtain vital information about their residents when they need it the most.
These concerns with aged care are reflected in the final report of the Royal Commission into Aged Care Quality and Safety released in March. Among its 148 recommendations was: “Universal adoption by the aged care sector of digital technology and My Health Record”.
More specifically, this recommendation requires that all aged care facilities implement a system that used My Health Record by 1 July 2022. By this date, every approved provider of aged care delivering personal care or clinical care should:
- use a digital care management system (including an electronic medication management system) meeting a standard set by the Australian Digital Health Agency and interoperable with MHR
- invite each person receiving aged care to consent to their care records being made accessible on MHR
- on consent, that person’s care records (including, at a minimum, the categories of information required to be communicated upon a clinical handover) are kept up to date.
Ms Brennan says she would like to see the record evolve from a ‘drop box’ of PDFs into an actual digital record. “Imagine having an easily accessible graphical depiction of your bloods so that you can track any improvement that lifestyle changes may be making to your liver function, for example,” she said.
“It would also improve public confidence if there was a specific My Health Record app (created by a non-commercial organisation like CSIRO). Not a web-based link to My Gov or one of the three current third party apps that may be harvesting, packaging, and reselling data in unspecified ways and that are not contributing to research and improved health outcomes.”
There are two apps that can show users what information is in their record. One is called Healthi and the other is Healthnow.
“Both apps have passed strict privacy requirements,” Dr Hambleton explained. “No data that is viewed is stored on a patient’s mobile phone. It disappears as soon as the app is shut down.”
My Health Record has some important work ahead before this ambitious system can become the promised panacea of data, able to efficiently store the health information of all Australians – and make everyone happy.