My Health Record could mean a death sentence!

I have a case which contains over 2000 pages of medical records. My Health Record has none!

NO BENEFIT to those with multiple, complex and chronic health conditions

Living with multiple, complex and chronic health conditions I have been in-and-out of hospitals (general and emergency admissions) throughout my life and attended at numerous specialist appointments both here in Australia and overseas.

Now for people like myself, My Health Record sounds fantastic.

But as they say, if it sounds too good to be true it usually is!

The government promulgates that "My Health Record is an online summary of your key health information.

"When you have a My Health Record, your health information can be viewed securely online, from anywhere, at any time - even if you move or travel interstate. You can access your health information from any computer or device that's connected to the internet."

Well imagine my surprise and horror when I recently checked My Health Record online:

> Diagnostic Imaging Reports - "No information is available"
> Discharge Summaries - "No information is available"
> e-Referrals - "No information is available"
> Event Summaries - "No information is available"
> Pathology Report s- "No information is available"
> Shared Health Summaries - "No information is available"
> Specialist Letters - "No information is available"

The reality is, My Health Record is of NO BENEFIT to those like myself with multiple, complex and chronic health conditions.

I have a case which contains over 2000 pages of medical records. My Health Record has none!

This is the very reason why I hold copies of my health records, pathology results, referrals, specialist reports, imaging files and reports, hospital admission and discharge summaries.

As well, l have another case with two inches of X-rays, MRI, CT and US Scans.

So many times I have had to rely on those records I have in my possession when going to specialists.

Among the first things a specialist will ask is how was your condition diagnosed, where, by who, when; do you have any test results, scans, etc.?

The biggest concern of patients like myself, with a myriad of complex and chronic health conditions, is that reliance by any health agency on My Health Record could mean a death sentence, permanent incapacity or worse - permanent disablement and a life of suffering.

My Health Record has no historical medical records, there are missing records, there could be data access issues resulting from network connection failures, hacking, or viruses.

Is it worth the risk?

We've all experienced the inconvenience, effects and implications of Telstra data and network failures.

If My Health Record is to be palatable to patients like myself, then it needs to be an accurate repository and resource where all of my health records (historical, current and future) are securely stored, promptly added to, and can be accessed without reservation or hesitation on the part of any medico, specialist, or health agency so that my medical situation, issues and concerns can be dealt with without delay.

All Australians need to be secure in the knowledge that medical records held pertaining to them are complete, up to date without any gaps, and accessible.

But the one problem in trying to fix My Health Record is cost.

The federal government is trying to fly a plane without wings - it will only crash and burn like the failed Home Insulation Scheme. It's another dud!

Do patients have to die before the government swallows its pride and abandons the My Health Record system?

We already have Medicare which is a complete dossier of any service availed of by patients, all that would need to be done is for medical records, results, and test summaries to be attached to the relevant bill record.

Why try to reinvent the wheel?

I am far more comfortable wearing a MedicReady Alert pendant which informs first responders where my medical records are located and I carry a comprehensive first alert I.C.E. accident and emergency ID data card which not only provides the facility, but the means by which I can convey my emergency and medical data when it's needed most!

Some years ago, and in response to my situation, I developed a comprehensive emergency medical data card to assist allied, specialist and emergency services personnel to better respond to my needs and help me.

Over the years I have fine-tuned the concept and created MedicReady patient, accident and emergency kits and pendants which are available to anybody.

MedicReady works for me and has worked for others, and I am comfortable and safe in the knowledge that my medical and emergency data is up to date, always with me, and, most of all, accessible when I need to rely on it most.

My Health Record is supposed to save lives, but as it is it will endanger lives.

Originally published as My Health Record could mean a death sentence!