The reverse side of my business card says “Exercise guidance for chronic conditions”. Those of us with chronic conditions often have a team of medical people keeping us healthy. The bane of our existence can be the information involved in our cases. Therefore I feel justified in digressing from exercise and diet topics to take a look at the practicalities of our medical records and information sharing.
In 2015, shortly after I had been diagnosed, I wrote eHealth and the silo culture of medicine, published on the Australian Independent Media Network. In that article I gave the following as an example of why I thought an eHealth system was a great idea.
Once I discovered I was unwell, I signed up for eHealth. The driver for my doing so was a very embarrassing discussion with my gastroenterologist.
“Have you had a colonoscopy before?”
“Yes, I have, years ago.”
“Who did it?”
“Ummmm, I’ve forgotten.”
“Where did you have it done?”
“Ummmm, I’ve forgotten.”
eHealth would solve that problem, nicely, wouldn’t it?
We are now in 2017, creeping towards 2018. I follow a few medicos on social media and happened to notice A new hope for the My Health Record? by Dr Edwin Kruys, chair of RACGP Queensland and vice-president of the RACGP . “Ooooh”, I thought, “Good news!”. The most likely reason I noticed the article fly past in my notifications list was because on Friday I had the exact same conversation with a new specialist. And I felt as stupid this time around as I had the first time. This specialist asked me about my deliveries: was one of my children a forceps delivery? Hmmmmm – yes, I think so. I did remember the episiotomies (does any woman forget?).
Philip Darbyshire, Professor of Nursing, isn’t quite as positive about any new hope. In response to Kruys’ article Darbyshire wrote Is there really “New hope for My Health Record?” Why I think not.
I was sad again. But I laughed. Darbyshire’s article was from the perspective of a patient (yes, even the medical profession gets sick from time to time). His description of his first foray into the My Health record was similar to mine. He also has a similar disdain for faxes, I noticed.
After finally ‘getting in’ what did I find? Absolutely NOTHING. A giant black hole. A blank excel spreadsheet would look more inviting.
I signed in again recently to see if there had been any improvement. Nothing useful.
Back in 2015 I only had three specialists and a general practitioner to worry about. My current list:
- Colorectal Surgeon
- General Practitioner
I am also a patient at the Barbara Walker Centre for Pain Management.
On top of that, I have changed general practitioners a couple of times in the last couple of years, due to relocation. Changing general practitioners (GP) is a pain in and of itself. Let’s assume your GP has referred you to three specialists. Referral’s cover twelve months. You relocate, need to change GP. Visit a specialist after relocation. Ask for report to be sent to new GP. No, I’m told Medicare doesn’t allow that. In order for my new GP to be included in the correspondence (or replace the old GP) I need to get a new referral. Is this, or is this not, just plain silly? So I need to find the time to go to have an extra visit to my new GP just to get a replacement referral when my old referral has not run out?
With a decent MY Health record, I should be able to update MY GP and have that flow through the system seamlessly. It is, after all MY health we are talking about.
Getting your records transferred from one practice to another is expensive. I was told I’d have to get a quotation if I wanted the complete file sent to my new GP. I didn’t bother, I used my big pink folder of my own copies of endoscopy results and blood test results. Somewhere I have large envelopes of ultrasounds, MRIs and nuclear bone scans – but I’ll misplace them at some stage – how long should I hold onto these things? The answer is, I shouldn’t have to – they should ALL be available to ANY practitioner I give authority to. MY Health, is it not?
If, as a chronic condition patient, you have any health care plans the date of issue is important – if you change GPs and didn’t keep your copy, then that becomes a problem to be solved.
Then there is the whole blood tests thing. So three of my specialists (at least) all test for thyroid function. Don’t you dare go into a blood collection centre of one specific pathology company with three pathology requests (all wanting thyroid function) from three different doctors on the same day or the pathology company will charge you for two of the tests, rather than do the test once and share the results. I wrote about that back in 2016, If you have regular pathology tests, here is something you should know.
While on the topic of blood tests, you know how they tell you NOT to use your arm after a blood test? Good advice, may I say. Here’s what happened when I forgot.
There is space on request forms to copy in other medical professionals. However it isn’t a very large space: I almost need to have a preprinted list to attach these days.
Drugs may interact. Blood test results can be relevant to all my specialists. If I have an MRI this week for back pain, the images are useful to the colorectal surgeon. My physiotherapist retrieved ultrasound results from 2015. This was only possible because I remembered where I had that particular ultrasound done.
In my view of a perfect MY Health record, everything would be stored: blood test results, prescriptions, MRIs, x-rays, CT scans, ultrasounds, treatment/consultation notes. In fact, prescriptions should be electronic, I shouldn’t need scrappy pieces of paper. Speaking of prescriptions, I noticed Real Time Prescription Monitoring survey now open. This is a Victorian initiative, but a decent MY Health record should surely be able to replicate this functionality and save money? Also reduce the number of systems medical practitioners need to use.
Kruys raises some of the challenges.
Doctors have also voiced concerns about the medicolegal risks that come with accessing a patient’s My Health Record, for example when diagnostic tests and images will be available that may not have been reviewed and actioned by the requesting clinician. Clear guidance is required on how the reports are to be handled and who is responsible.
I am a patient, so to me the solution is clear. Those tests and images belong to me and I should be able to let whoever I want to review and/or action them, provided they are suitably qualified. It is my body and I paid for the product (the test/scan/image). Maybe I have decided to not see the requesting clinician any more and surely that is my right? Maybe not in the USA, but this is Australia. Discarding the tests and repeating them is a waste of money.
The amount of time clinicians AND patients spend currently sharing information has to be considerable. Time that could be better spent on clinical hours rather than administration. I’d be better spending another thirty minutes in the gym than scratching around in unpacked boxes looking for old medical records I may or may not still have. Brain fog is a symptom of many conditions – and if it isn’t from the conditions, the meds might give us brain fog. So try as we might we can’t always keep those records in pristine shape. The ones from 40 years ago? Heavens!
Too often, when looking at these sort of systems, the patient gets left out of the discussions. I hope this time around we are included. Of course, getting us to agree is probably like herding cats. Patients who do not want information shared can opt out. For many of us, a comprehensive system would be WONDERFUL!
If healthy people read this and think “Oh, but that’s never going to apply to me!”, yes, well, a lot of us used to say the same. I have a friend who has just become a cancer patient – out of the blue, totally unexpected. If you had asked me in the year 2000 what my health would be like in 2020, I’d have told you I was planning to sky dive at age 70. I still might, we shall see.
As an IT professional in another life, I can well envisage the many issues around a comprehensive My Health record. Secure data transmission, access rights to data, compatibility issues across medical practices and hospitals: the list goes on. None are insurmountable. Correcting typos would be a good start.
Other issues, such as medicolegal, stepping on professional toes and possible misuse of data also exist. Potential sharing between government departments worries me and strong protections would need to exist to ensure prevention.
I just want to be able to walk into a clinician’s office, open my My Health app on my phone and grant access to that provider to all my records. The lot. That is all.
How about you? What would you like to see?
Update August 29. I spent considerable time again today organising and collecting MRI films on disc because although they are available on-line, the specialist I’m seeing on Thursday doesn’t have access to that imaging provider’s system. Waste of half a day.
The Australian Digital Health Agency has been sharing updates. Here are a couple you may find of interest.