I still haven’t decided whether I want to opt out from getting a My Health Record later this year.
For more than half a decade, My Health Record (MHR) has received a hammering in the media for failing to make itself useful to patients or doctors.
E-health experts have called for a reboot of the $2-billion project, but the people behind the venture seem to have fallen prey to the sunk-cost fallacy, rendering any attempt to restructure the project near impossible because of because of the weight of the accumulated emotional investment in it.
Meanwhile, privacy advocates have expressed horror at a planned expansion of MHR, which will automatically create an electronic record for every Australian who does not opt out before the end of this year.
Since its launch in 2012, one in five Australians have volunteered to be MHR guinea pigs. About one million of those were roped in during pilot trials in the Blue Mountains and northern Queensland in 2016.
Around 6,300 GP clinics, 1,500 pharmacies and 800 hospital organisations are now registered with the project.
But specialists, a substantial portion of whom do not have practice computers, are still relying on GPs to send any referrals via a fax machine. As of September last year, only 263 specialists nation-wide had connected with MHR.
Shared health summary uploads, on the other hand, are chugging along, with 1.6 million in the system to date.
But it seems that some GP clinics are only participating because the e-PIP payment functions as a bribe. And even with serious money on the line, some GP clinics were reluctant to upload to MHR last year, forfeiting almost $11 million (or $9,000 per GP practice) in e-PIP incentives.
Embarrassingly, hardly anyone is viewing MHR. Over the past year, only 6.5% of registered health providers viewed at least one MHR document each week, an investigation by The Medical Republic has found.
Like most young Australians, I’m not a luddite. Digital technology is the air I breathe; I unthinkingly trust it for everything from online shopping to banking to socialising. And I want MHR to succeed.
So in the interest of balance and in the name of journalism, I hauled myself over to the Pymble Golf Club on Sydney’s leafy north shore one recent Thursday evening and sat through an educational event hosted by Northern Sydney PHN.
To my surprise, the talk was passionate and specific and very open about the potential pitfalls of information sharing, while also giving good examples about the many and varied benefits.
The presenter, Dr Laila Tabassum, a former medical doctor, and a PHN education and support lead at the Australian Digital Health Agency (ADHA), gave me a little more faith in the maligned system.
MHR is designed to serve the same purpose as a patient’s memory. While digitalisation makes that memory more photographic, patients don’t have to share anything that they don’t want to.
Privacy has been engineered into the system such that a patient can choose exactly which documents on their MHR they want to make available to a GP, a pharmacist, or a specialist using a limited document access code.
The only documents that can’t be hidden from view are shared health summaries and advance care plans.
Patients can also restrict access to their entire MHR by creating a record access code. And an audit log gives patients the ability to see which healthcare providers have viewed their MHR and when.
Two years’ worth of Medicare and PBS data is currently uploaded onto the MHR, but individuals can remove this data by ticking a few preference boxes on mygov.com.
The ability to keep certain medical information secret will be very important for some patients.
“Let’s say, as a hypothetical situation, since the age of 15 [a patient has] numerous STDs and has had 20 or 30 abortions,” said Dr Tabassum. The sexual health clinician may have uploaded that information onto the patient’s MHR.
“But for the physiotherapist, nothing against you, but you really don’t need to see that information.
“Or let’s say that I work at Royal North Shore Hospital and I know that all my colleagues are dying to know what is happening with my mental health,” she said.
“I can say, ‘Look, nobody from Royal North Shore can access my records’. So, I can lock it at that level. I can limit that access. That is my right.”
Some patients might seek an added layer of privacy by occasionally going to someone other than their regular GP, said Dr Tabassum. It would defeat the purpose of finding an alternative GP clinic if that visit was recorded on their MHR, so patients can ask the new GP not to upload any information.
The patient’s ability to finely control what information is visible increases the risk that the MHR will be incomplete, and potentially misleading. But this is no different to the current state of affairs where individuals can choose to withhold information from their healthcare providers irrespective of having a MHR.
Doctors currently use their judgment to analyse all the information about a patient, including their verbal history, before recommending treatment. They will do the same with MHR.
“MHR is not intended to be a complete record, it is a summary of information only,” an ADHA spokesperson said. “The MHR is only one of a number of considerations that may influence a clinician’s decisions.”
Out of the 5.5 million people with a MHR in Australia, only between 0.1% and 0.2% have currently placed any restrictions on their records. In cases of emergency, however, all these MHR privacy restrictions are dissolved. The “break glass” feature on MHR gives doctors access to all the information in the patient’s record, excluding the personal notes, for five days.
But clinicians and patients cannot access information in a MHR that has been cancelled, rather than simply restricted, even in an emergency, although that cancelled data is still archived for between 30 and 130 years, rather than being deleted.
Like all healthcare providers directly involved in the care of a patient, GPs have a standing consent to view and upload information to MHR until the patient withdraws consent.
While not essential, it was best practice to discuss with the patient what was being uploaded for a shared health summary, the ADHA spokesperson said.
In some cases, patients may ask their doctor not to upload certain pieces of information to MHR, particularly if they have a potentially stigmatising health condition.
GPs had a responsibility to ensure MHR is up-to-date and complete and could refuse to upload substantially incomplete information if they believed, in their clinical opinion, that the omission of important information might increase the risk of harm for the patient, the ADHA spokesperson said.
In cases such as these, the healthcare provider should have a discussion with the patient about the clinical risk that might ensue from not uploading specific details, the ADHA spokesperson said.
Under state and territory laws, GPs have to ask a patient’s permission before uploading information about category 5 conditions. In NSW, this includes HIV AIDS, but not mental health conditions.
But deciding not to upload sensitive information to MHR without consulting with the patient could backfire, Dr Tabassum advised.
She gave the example of a GP with an interest in sexual health working in Sydney’s inner west who hadn’t thought to upload information about HIV AIDS or hepatitis C to MHR. It turned out that many of that GP’s patients were very keen to have that information made available to hospital staff.
This GP was subsequently probably the biggest MHR user in the area now, Dr Tabassum said.
THE DR GOOGLE MENACE
“Dr Google” is a major annoyance for some GPs. With pathology reports now appearing in MHR, some GPs are worried that patients will be able to see (and may try to interpret) results before their follow-up appointment.
Healthcare providers can view pathology results uploaded to MHR immediately, but there is a seven-day delay before patients can view the reports. But some GPs say their practice is too busy to organise a follow-up appointment within seven days and want the delay period extended.
The seven-day rule was decided upon in 2014 after consultation with various medical colleges, including RACGP and RACP, the diagnostic imaging sector and health consumer advocates. The ADHA says it will be conducting a review of the rule once more information is uploaded to the MHR system later this year.
In the meantime, GPs can specify “do not send to MHR” on pathology request forms if they are concerned. Pathology and diagnostic imaging reports are still sent directly to GPs via the usual processes.
BUSINESS AS USUAL
The major takeaway from the Pymble education session was this: for all its potential benefits, MHR doesn’t actually change much about a doctor’s practice – and that’s a good thing.
“What MHR does is it give you that little bit extra information,” Dr Tabassum said.
“So it will probably enhance your service, but not necessarily replace what you would be doing anyway.”
If a patient has a fully up-to-date MHR, that has the potential to save time that would otherwise be spent gathering all the relevant clinical information.
But, if data seem to be missing from a patient’s MHR or a patient doesn’t have a MHR, GPs just stick with the status quo. “What do you do currently?” Dr Tabassum asked. “Call the pharmacy or GP that documented that information.”
It may feel like a duplication of effort for GPs to upload information to MHR after making their own detailed clinical records, but it pays dividends. It takes about one minute per patient for a GP to upload a shared health summary to MHR. It’s essentially four clicks of the button. That effort could save another GP, a pharmacist or a specialist, the pain of having to hunt down relevant health information.
The same goes for specialists uploading event summaries to MHR.
To demonstrate this point, Dr Tabassum shared a personal story about her husband, who recently saw a new cardiologist after being admitted to hospital with atrial fibrillation a year or so ago.
“Being a medical professional, I think that I remember everything and I know everything and I can rattle off every piece of information that has to be given,” said Dr Tabassum. “I was sitting with my husband in front of the cardiologist and he said, ‘Who said he needs to have this medication?’ … I could not remember!
“Then [the cardiologist] had to ask the reception staff to dig out all the information about my husband. So we had to wait.”
It took the cardiologist’s office about two and a half hours to pull all the information together. “[My husband] does have a MHR, but other consultants obviously didn’t put up any information there,” she said.
The potential benefits of MHR are fairly obvious, but the system continues to be a tough sell for the ADHA.
Change is hard in medicine, explains Dr Tabassum. Doctors know what works for their patients and are often set in their ways.
“But [MHR] has been going on for the past five years,” she said.
“There have been a lot of trials. The benefits are coming out. It is probably a time to start thinking about it if you haven’t yet.”
Giving patients 24/7 access to their health data will be particularly helpful for people with chronic health conditions, people travelling interstate or overseas, and the elderly. “Those people will benefit most out of the system because this information is following them,” Dr Tabassum said.
Imagine a patient travelling overseas who runs out of their diabetes medication when their luggage gets lost, or when they suddenly have to prolong their trip.
“If they have access [to MHR], they can show a health professional over there who may be able to provide that support,” Dr Tabassum said.
To drive her point home, Dr Tabassum left the audience with this quote:
“That it will ever come into general use, notwithstanding its value, is extremely doubtful; because its beneficial application requires much time and gives a good bit of trouble both to the patient and the practitioner; because its hue and character are foreign and opposed to all our habits and associations.”
Taken from The Times newspaper in 1834, this quote by Sir John Forbes describes the uncertain future of the stethoscope.
GO DIGITAL OR GO HOME
As I left the golf club, I spotted Dr Tabassum in the entranceway. I had one more question. “If I decide to opt out of MHR later this year, can I opt back in later?” I asked.
“Yes, of course!” she replied.
“Good,” I thought. “I might just do that.”
I plugged my home address into the Uber app on my phone, oblivious in that moment to the irony of applying such scepticism to digital health while simultaneously trusting the digital universe to safely get me halfway across Sydney on a Thursday night.