The Hamilton Spectator

Patient-centred care begins with the patient record

No sale of personal health informatio­n, except to the patients themselves, of course The numbers were all over the place, but no one said — my doctor doesn’t charge for this

- Margaret Shkimba is a writer who lives in Hamilton. She can be reached at menrvasofi­a@gmail.com or you can “Friend” her on Facebook and follow her on Twitter (@menrvasofi­a)

I recently signed up for online banking. I know, most of you have been banking online for years; I’m late to the party. Having started my career in computer programmin­g, I have huge trust issues with technology. I wasn’t about to give over my financial informatio­n and access to my bank account to a technology so easily hacked and compromise­d. I was good with the banking machine, but not so much with online banking.

But I caved a few months ago and it’s made things a lot easier for me in terms of how I manage my finances, limited as they are.

Another big change I recently made was getting a new family doctor. I’ve been using the walk-in clinic down the street if I needed anything, and the care has been good, but I’m looking for some consistenc­y in care and a family doctor is where that’s at. There were a few test results that I wanted copies of, not a lot, maybe five tests, a total of seven printed pages; tests I had recently.

I called the clinic to arrange to pick up copies of these tests. I figured there might be a small fee but I was shocked and surprised to find it would cost me $50 to get my health informatio­n to my new physician.

Now, I’ve worked in administra­tion for almost 40 years. I know how hard it is to hit the print key on the computer, pick up the paper from the output tray and put it in an envelope. And I know how much easier it is to attach a .pdf to an email and send it out in the blink of an eye. I stuttered, wh-what?

Overtaken by my shock and outrage, I said no, I don’t think so. I’ll just get the tests done again if I have to, I told the clerk.

After I hung up, I took my outrage to Facebook, where I was even more shocked and surprised to hear the stories of my friends and how much they had to pay, or refused to pay in a couple of cases, to get their records transferre­d, or not, to a new physician.

One friend had to pay $125 for each of her elderly parents’ records to their retiring physician. Another wanted $500 to get records transferre­d from B.C. The numbers were all over the place, but no one said — my doctor doesn’t charge for this. It appears that having to pay for your own health records is the norm in our patient-centred care health-care system. This is the outcome of a fee-for-service business model. I contacted the clinic and asked them to justify the fee. I haven’t heard back.

According to the recently released Ontario Auditor General’s Annual Report for 2015-16, the Ontario government has been working on eHealth Ontario for over 14 years and has spent $8 billion on the effort. The work is unfinished and there is no date of expected completion.

The mandate of eHealth Ontario is to “implement a system that, in addition to providing an electronic health record (EHR) for every Ontarian, includes a data network that stores EHR data and makes it quickly and securely available to health-care providers”.

Why is this taking so long? How is it that the banking industry can manage our money securely, something everyone wants, and the government can’t oversee the design and implementa­tion of a database of health informatio­n, data hardly anyone not directly connected to a patient’s circle of care wants? That’s not to diminish the importance of privacy in our health-care system, but to illustrate that data security can be achieved, it’s not impossible, nor is it cost prohibitiv­e or the banks wouldn’t be offering the service.

In a system that professes to be patientcen­tred, charging patients outrageous fees for copies of their health record is antithetic­al to good patient care, like so much is in a fee-for-service business model. I want my physician to have access to all the informatio­n about my health over all my years, not only for my health needs, but because I believe in retrospect­ive chart audits in furthering health-care research. Incomplete records leads to incomplete data collection, which results in not wholly accurate research outcomes.

The question of who owns the health record has been answered in the courts with one of those forked-tongue answers: patients own their informatio­n, but the physician owns the record. Patients can look, but they can’t touch. Unless they pay.

In relation to the sale of eHealth Ontario, Health Minister Eric Hoskins is on record stating: “I want to be clear: there will be no sale of people’s personal health informatio­n.”

Except to themselves, it would seem.

 ??  ?? MARGARET SHKIMBA
MARGARET SHKIMBA

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