I JOINED what was then the Patient Controlled Electronic Health Record, now known as My Health Record (MyHR), as soon as it was available. I won’t be opting out.
In addition to working in urban Sydney, I have worked in the Northern Territory since 2006, using the statewide (albeit very old) medical record, which has been instrumental in permitting continuity of care for patients who move around the NT. Of course, if they have care outside the NT, their treatment is blind to me.
I have been really impressed with the value of knowing who has had treatment already for a condition I thought I was seeing for the first time, of knowing what medications the patient is prescribed, in addition to the ones I thought I knew, and of having specialist access more easily.
The specialists in Darwin (750 km from where I work when I am in the NT) can share the patient’s history in addition to the email I send as referral, and on the phone we can sort things out. Face-to-face access is really difficult. In emergencies, transfer of care for things I cannot manage is always with the clinicians at both ends reading the same information.
How different to Sydney, where patients have numerous GPs (one had six, one for each of her conditions – we declined to be number seven), with difficulty in accessing and incorporating all the information from all the GPs the patient has seen.
There is much discussion about fear of data being accessed, which I find curious. I have not heard the same anxiety expressed about the ability lawyers have always had to get a list of all your use of Medicare, and so imply your mental health status (and they use this for contentious legal argument).
I have not heard the same anxiety expressed about the genome testing companies, who give you an answer but keep the sample, which is then theirs. So the person accessing these services is potentially giving their DNA away.
I have not heard the same level of anxiety expressed about other government agencies: are these same complainants worried about those mysterious hackers who are so keen to discover health or medical history, also hacking the other aspects of MyGov, my OPAL card, my car registration, and all the information gathered on MyAgedCare? No one gives us a universal guarantee of absolute confidentiality, in any aspect of connected life.
Readers of this article will include GPs, who know how a MyHR is created, and others who may not understand that the big opt-in/opt-out is all about creating a space to upload information. The “option” is all about computer handshakes and identification, and nothing about medical information. To have medical information uploaded, the patient needs to go to the GP (not the pharmacist or the specialist) and negotiate together what information will be uploaded. In my experience, everyone wants their allergies uploaded. We discuss what medicines are really being used and upload them, and look at the significant diagnoses and upload those the patient agrees to.
One of the difficulties GPs have had in the past 5 years with this system (Patient Controlled Electronic Health Record then MyHR) is the way the power is all in the hands of the patient. What is the value, GPs have said, in having an incomplete record? Shouldn’t we simply upload everything?
The developers of the process recognised the primacy of the patient in the original name: Patient Controlled Electronic Health Record. So, if you have concerns about what the mysterious hacker might discover, simply don’t upload it. Such gaps will of course decrease the value of the record, but if that makes the worried patient happier to take part, it is within that person’s ability.
The MyHR has been around since 2012, under different names, with huge difficulty in signing on when I joined (32 pages of identification), which was slowly made simpler. And that was just to identify me as the person I am. This difficulty signing on was so great, and such a barrier, that the government set targets for GPs to upload histories to encourage the GPs to encourage the patients to undertake the huge task of signing up. Very little money was distributed under this scheme, as the difficulty of explaining a completely new system to patients, getting them to go away and undertake the web or phone process of opting in was so great that it was hard to make the target.
Opting in was hard. Over the time the process existed, patients were not really aware that the option was available, and GPs ran out of puff to add this to consultations that are already always too short for the patient’s expectation. Even getting patients in public hospital waiting rooms to sign up, with dedicated staff to help, was difficult.
I have patients already who request that I change the medical record I keep for them, which is private to my practice, except for legal fishing by subpoena. I have patients whose hepatitis C is cured, so, they argue, is not relevant any more. I have patients who feel that their recurrent sexually transmitted diseases are treated, so again are no longer relevant.
So, opting in has been tried, over a length of time, with less than 30% of the country signing up. Is it any surprise that the signing in (remember, that is just the identity bit, not the medical bit) has changed to opting out?
Patients have less control over the multiple medical records kept by all the GPs they have seen, than they have over the MyHR. And we know Russians have already held a GP medical centre’s records for ransom.
I use Dropbox, Facebook, and internet banking. I fancy there is more potentially embarrassing and problematic information about me within these sites than the government sites that I have signed up for. I elected to join MyHR because I know the value of continuity of care, of being able to access my history when I am unconscious, and I will take the risk. After all, we manage the digital anxiety of the linkage that Google can make in relation to our photos and our shopping.
And those who cannot manage that anxiety, don’t connect. It is anyone’s choice to upload medical information, via their GP, and ultimately, to opt out. And it is anyone’s choice to give up the value of connected care out of worry about risk.
In my opinion, that worry is out of proportion to the risks we all accept daily.
Dr Linda Mann is a GP based in Sydney’s inner west and Borroloola, NT. She is a Visiting Medical Officer at Royal Prince Alfred Hospital in antenatal care, and the GP Clinical Lead for HealthPathways Sydney. She has a passionate interest in patient care through promotion of the relationship between primary care and the rest of the health care environment.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or MJA InSight unless that is so stated.
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