A plea from one patient
I’ve just had a consultation for blocked ears, with a GP at a busy Adelaide clinic. People have told me I don’t listen, but this was definitely a hearing problem. GP took a swab, cleaned me out, gave me a computer-printed prescription for drops and antibiotics, handed me a tiny hand-scrawled chit and sent me on my way suggesting I ring back on tuesday afternoon for the lab results – ostensibly in case the prescription wasn’t appropriate. That all seemed basically OK and efficient. I had to ask what the chit was for. He said “just hand it to reception”. I did just that. Paid my $64 via EFTPOS and received the tiny EFTPOS receipt.
I said to the receptionist, “Don’t I get a proper receipt?”. She told me I could have a copy of the paperwork they send to Medicare with the claim for my $30something reimbursement. I asked to see it. All it had to describe my problem was “Consultation B” or something similar. I told the receptionist that that was useless to me. It seems that this large GP practice had no mechanism for furnishing me with any record whatsoever of the diagnosis and treatment I had just received. Apparently this is par for the course with GP and specialist consultations.
Now just about any other service that I might purchase in the community involves some form of record – usually a docket summarising the services provided. Buying a coffee, for example. For something larger, I might take a business card with contact details – phone, web address, email. Par for the course.
When I last booked my car for a service as a result of being caught in a Sydney flood, I was sent a text SMS reminder to my mobile, I was emailed the confirmation, I was encouraged to discuss the problem when I dropped the car off, and was able to place a cap on what I was prepared to spend. I received a detailed, itemised report of the problem, the work undertaken, and a price breakdown of parts and labour. It cost about $140 and they had clearly spent more than one hour working on removing the water and drying the car thoroughly. I also received a followup email a few days later thanking me for my patronage and checking that everything was still OK with the car. My dental practice is similar in their customer service and record keeping.
But not in GP or medical specialist land. Why is it that we expect, and in most cases accept, such completely different standards in customer service and record keeping? Is it just the results of supply and demand? Is it just the long-entrenched, paternalistic attitude of so many clinicians? Is it a clinical culture of protecting patient information that clinicians see as their property? Is it the result of the funding model used in Australia? Is it the over-represented and outspoken voice of privacy zealots?
Whatever the reason, surely the injection of a little IT into the process could turn things around. I’d love to be emailed a summary of that visit. I’d like to be emailed a copy of my lab results on tuesday. It wouldn’t take much. Just a little awareness and a touch of willingness. Is that too much to ask of the medical world?
Hi Eric
You raise some pertinent points about (clinical) health information management and silo-isation. Your recent experiences echo mine; for the last few years I have been attempting to co-ordinate and manage the healthcare for my ageing parents.
It’s been – shall we say – an “interesting” experience.
Because I am not the patient, this adds a few extra degrees of difficulty (with or without official guardianship or power of attorney).
A relatively straightforward example (among many): My dad has weekly blood tests. It’s important to learn of the test results each week because these determine his medication dosages (not as “simple” as INR and warfarin, I’m afraid).
Can we get any pathology laboratory to forward those results in a timely manner to me? Not a chance!
Can we get them to forward them each week, in a timely manner to Dad – given he is the patient? Not a chance!
Can we get them to forward them to his referring clinicians (GP or specialist) – Yes! but often these are transmitted to one, not all clinicians, or are late-arriving, or get filed or go unnoticed, unless I phone and pester for them.
(We’ve swapped providers three times, looking for better service – hasn’t worked; probably because pathology companies have been sold or bought-out or amalgamated).
These practices have persisted now since 2007, despite the family and clinicians requesting copies be sent, despite everyone signing all the necessary authorisations and privacy consents, despite everyone’s best efforts and intentions.
It’s not for a want of trying or negotiating, or agreement or evident need.
On those odd occasions when all arrangements go to plan, we receive pathology results by snail mail (soooo last century!)
The clinicians involved have all been diligent and have welcomed the opportunity to share information and to have additional day-to-day monitoring of Dad’s health from the family. It is almost impossible to do – or do well – given the disconnected services we rely upon.
And just to up the ante, if Dad is referred to another clinician – who has not previously been involved in the care of chronic conditions – the whole thing goes to hell in a handbasket. No history, no access to results, no current medications, no problem lists. New tests, more work-up, duplication (frustration, waiting rooms, costs, more appointments etc)
The complexity of chronic disease management is such that few patients (?perhaps especially the elderly) will be able to track and report their medications, responses, results accurately.
Our first-hand experience shows that relatively straightforward medication management can work reasonably well; my elderly patients manage their medications by ‘routine’ (a little orange tablet with breakfast, two round white ones with lunch, and the blue one with dinner). This works -without issue – until some ‘disconnected’ clinician (legitimately) prescribes some other drug which just happens to be a white, orange or blue tablet.
So it’s down to me.
I attend all medical appointments.
I have had to establish medical records for both my parents, which I carry with me on a USB.
Let’s be clear, these are not medical records worthy of the name.
I have to re-type the information into a database, spreadsheets, write and update notes, refer to scans, results, track all changes to care plans or scan and save documents.
It’s all pretty dodgy.
The only advantage it confers is that the available info is in ‘the one place’.
All his clinicians now ask for a ‘copy of whatever you’ve got there that I haven’t seen yet’ as soon as we walk into the clinic.
The clinicians need this as much as the patient.
This whole approach is replicated for my Mum.
Managing chronic conditions keeps folk out of hospital, and to the extent possible, allows them quality of life, independence and dignity. This isn’t likely to become less of an issue, given our ageing population (we hear this time and and time and time and time again! Shush! Really! we get it already!)
The price (cost) of chronic disease management is eternal vigilance. The INFRAstructure, INFOstructure and care-service connectedness necessary for this does not exist for the great majority of patients or clinicians.
So, what of those folk who don’t have a bolshie daughter accompanying them? …demanding copies of results, medication charts, observations, radiology and scan results, referrals, operation reports, care plans?
What happens to patients who are not so lucky to have health care services provided by the same fabulous, forward- thinking, collaborative clinicians my parents have had the great fortune to encounter?
What quality of healthcare can be received by people who are gravely and acutely ill, distressed or confused? Or those who don’t have English as a first language? By those who don’t have advocates or carers? By those who are socially isolated? Or are mentally ill? By those who have little if any understanding of the health “system” or an ability to negotiate their way around it? By those who don’t own or use any computing?
And what of the future? Do we really believe that a personally controlled medical record will serve patients like my parents? Or will it just help me? (probably… but I’m not the patient! – and there will still be control and consent issues, I’m sure).
Strangely, the only information management practices which seem to work optimally (in my experience, and perhaps yours) are those related to ‘finance’ (Medicare, private health insurance, fees, invoices, receipts).
These administrative services are generally quick, efficient and mostly accurate.
How sad is that?