A personal perspective from Pam Moore, Consumer Health Advocate and Consumers SA Executive Committee member .
I am person who was in favour of Electronic Health Records, now known as My Health Record (MHR), and attended some early implementation meetings as a consumer representative prior to their role out in 2012. In early 2017 as a person with several health conditions who was travelling around Australia, I asked my GP to link me into the MHR system.
Prior to MHR when travelling I always carried a letter from my GP which included all my medical conditions, medications, immunisations and specialists contact details. This letter also contained a copy of my most recent blood tests. As I travelled around and had more blood tests I would obtain a copy of the blood test results and keep that with the letter, so I had an accurate complete record.
Whilst travelling in early 2017 I did have an incident which made me wonder about the benefits of MHR. I went to a rural GP explaining I had MHR. The response was “I believe you but would prefer you to tell me your history yourself”. This seems the reverse of the purpose of MHR.
In November I was asked by CASA to write an article about “My Health Record” to assist consumers decide whether to opt in or out.
As research for the article I went on to my own “MHR” which highlighted a number of significant concerns and made me question the benefits.
A locum visited me, told me to go immediately to hospital emergency department (ED). The locum’s suspected diagnosis was incorrect but was recorded in MHR. Had I not checked and removed the information, this would have be taken as fact. Travel Insurance doctors can access MHR, and had they seen that I had X when I had stated I hadn’t had this, it could void travel insurance. (The ED diagnosis was not uploaded.)
The Clinical Records page has several subcategories –
Diagnostic Imaging Reports: only contained Public Hospital Reports from 1 hospital, the Royal Darwin Hospital (RDH) - an August 2017 admission. I have had other diagnostic imaging, over the 2 year period, but from private providers. These were not recorded.
Discharge Summaries: only contained summaries from RDH from August 2017. I had discharges from 2 Adelaide private hospitals which were not recorded.
E-Referrals: none recorded, even though my Adelaide GP had done these.
Event Summaries: nothing recorded.
Pathology Reports: only contain pathology from RDH for August 2017, even though I have had blood tests at least 12 times over the 2 year period, many as a public patient in Adelaide and rurally, as well as a private patient.
Shared Health Summaries: only the initial January 2017 Shared Health Summary. There have been 3 GP Management Plan updates since this time. For people who have these plans, they would be a far more reliable source of information.
Specialist Letters: none recorded even though I have 3 regular specialists, 1 as a public patient and 2 as a private patient.
misleading information (also has incomplete information)
Medications: Lists all prescriptions written by my GP, (but none from RDH, where I was prescribed strong painkillers) or from my 3 specialists who had also written scripts.
As a person with a compromised immune system I need to travel with 4 different types of antibiotics and have repeats of all of these.
However MHR only shows the number of scripts written, with many of these not being dispensed. The MHR prescribing/dispensing page states dispensing records -not available. The information available could lead other medical practitioners to come to the conclusion that I continually take antibiotics.
No information – I phoned MHR regarding some of my concerns, including having no immunisation records. The person suggested I contact the Australian Immunisation Register to have this information included.
The major flaw with MHR
The MHR system records uploaded files from different health facilities, but the information in these files isn’t transposed into the relevant summary areas within MHR, which in many cases remains blank. Therefore the information is recorded in a disparate and disorganised way that makes the MHR unclear and useless.
The only part of my MHR that was up to date and complete was my Allergy and Adverse Reaction page which stated I have 1 allergy. Everything else was either out of date or absent. In principal the concept of MHR is of benefit, but such a system has to be accurate and up to-date otherwise incorrect information can result in detrimental outcomes. So should you stay in the MHR system or opt out (which you can do at any time). Unless people opted out by 1 February, their medical records will be uploaded to MHR.
I understand that I can add to the MHR information but feel far more comfortable with my GPs letter, which spells out all my conditions, my current medications, the list of my specialists, their contact details and the most recent blood tests. As I travel I can obtain copies of blood tests and put in my file. This does have shortcomings, namely should both my husband and myself be unconscious people might not be aware that I carry an accurate medical summary.
consumers Before deciding what to do I also suggest visit the Australian Privacy Foundation at https://privacy.org.au/campaigns/myhr/. They report MHR has cost in excess of $2 billion, with an annual running cost of $500 million. (This report suggests if I want it to be accurate I need to do it myself. I was never aware of this. Is this information correct?)
MHR was introduced in 2012 and the problems I have found with MHR personally lead me to question its benefits. Having MHR gave me a false sense of security that my accurate medical information was readily available to any medico I may seek treatment from. I suggest consumers think carefully before allowing their medical records to be uploaded onto MHR.
I believe there are benefits for health consumers who do not carry their own personal health care summaries to opt in to MHR, but suggest for consumers who have complex and constantly changing health factors they consider annually obtaining health summaries from their GP and making their own record.