Graphic by Holly Jones
The doctor doesn’t eye me suspiciously before printing the prescriptions like I expected he would; he just flat-out refuses while staring at the screen. He says he wants a letter from my previous GP. How do I explain that I don’t have a GP? How can I detail my thirteen-year career as a consumer of mental health service – from Canberra to Newcastle, Sydney to Cooma, and back to Canberra. It has been a string of walk-in clinics, and a disorienting oscillation between the psychiatrist who effectively saved me and a series of over-worked bulk-billing counsellors who, at best, stopped me quitting whatever casual job I was working at the time. The doctor takes advantage of my shock to usher me out the door. He suggests I talk to the receptionist about contacting my previous family doctor in Sydney. I have three days of medication left.
**
My first interaction with the Personally Controlled E-health Record (PCEHR) was during employee training to input data into the Medicare Consumer database. It was 2012, and the newly created Department of Human Services had taken on business from other government departments, including administering the new online health summary. In the full-day training session, we were told that the Australian Government was leading the way with this innovative new system. People would be in complete control of their health information and outcomes. Within two years almost all GP and specialist surgeries would be signed up.
Most of the public servants in training with me were eager to leave before the scheduled finish time. We’d travelled from our base offices and would not be reimbursed for the additional commute time and costs. These training days could usually finish early if we rushed through the material, didn’t ask questions, and took a half-hour lunch instead of the full hour. When somebody asked a question about privacy concerns I heard groans and muttering. Most people were looking at their phones under the table for the whole day.
**
Like up-selling a meal deal, we had a script we used to encourage people to register while they were making rebate claims or updating their Medicare details. A regular customer I saw about twice a week had signed up for the PCEHR after the very first spiel. She told us, “I already fucking did this, but none of my doctors use it so it’s pointless.”
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Five years and three governments later, I’m standing at the front desk of the doctor’s office waiting for the receptionist to finish his phone call. He tells me that he can request my files be transferred from my previous medical centre by faxing them a form. Right now, he is on hold to their receptionist, waiting to get their fax number. I’m still a bit confused by the doctor’s refusal to prescribe the medication I’ve taken for almost ten years. I tried showing him the ‘medications dispensed’ page on my phone but he waved it away, saying he needs something “from another doctor”. The newly re-named ‘My Health Record’ will not suffice.
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When privacy concerns were raised at that training session, we had been assured that the content of doctors’ notes would not be accessible. The only thing visible would be a record of the visit to the doctor. This confused me a little; it seemed pointless if no actual medical information was going to be uploaded. I registered for my own record to find out what was going to be available. Immediately, I could see my Medicare and Pharmaceutical Benefit Scheme (PBS) claims history going back two years, as well as my Australian Organ Donor Registry (AODR) information. It was all the same information that I’d already been checking through the Medicare online portal anyway. I saw some of the new headings I’d heard about at training: Pathology and Diagnostic Imaging reports, Event Summaries, e-Referrals. The new sections were all empty; I’d need to remember to ask doctors to upload information for me.
**
The receptionist hangs up the phone. The last medical centre I went to doesn’t have a fax machine but they can email my signed ‘consent to release information’ form. Well, yeah, it’s 2017. Who still uses fax? The receptionist can’t email him though, because that would involve scanning the consent form, and their scanner is broken. He pushes my Medicare card back across the counter at me.
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Since I first registered for the government’s electronic health record in 2012, I’ve asked at least four different pathology and diagnostic imaging providers to upload reports. Every time I’ve been sent to a new specialist I’ve asked the referring doctor to create an e-Referral. I’ve also had quite a few health ‘events’ since registering. Despite all this, my record has remained largely unchanged for six years. Not a single report, e-Referral or ‘Event Summary’ appears in my file.
There was, and still is, nowhere in the My Health Record for me to put, concisely and in my own words, information I think would be important for healthcare providers to know in an emergency situation or otherwise. They could, at best, glean information about current medication dosages by scrolling through my PBS history. They can see that I have claimed rebates for seeing specialists but not what they specialise in, or what they have found and treated. There is no information about any of my chronic health conditions or dietary needs and no capacity for me to provide it. It doesn’t feel like I’m in control of my information at all.
**
I drive across town to the next closest walk-in medical centre I can find on Google Maps. After I’ve filled out my second new-patient information form for the day, I wait almost two hours. I see the doctor for five minutes and walk out with the three scripts I need.