What is that antibiotic I am allergic to that sounds like penicillin but isn’t? What happens when I take ibuprofen? Did my last ECG have a left or right bundle branch block? Am I due for my pneumonia shot yet? What does proteinuria mean?
Occasionally for my parents and often for my patients, I am the default holder of such information. Sometimes, in the fog of ill health, people forget critical information like their heart stopped beating upon receiving a certain anaesthetic or they have a propensity for low blood pressure. Sometimes, a meticulous discharge summary has been shoved into the bottom of a drawer where it stays while doctors frantically chase information on which a patient’s wellbeing, or even life, depends.
As an oncologist with a focus on very elderly patients, I have a special need for health information at my fingertips. Australia has a heavy burden of chronic disease including heart disease, diabetes, obesity and cancer. Eleven million Australians, including nearly 90% of those aged over 65, suffer from at least one chronic condition, and usually multiple. Given the imperative to avoid fatal toxicity, I need the sort of detailed information that the majority of patients simply don’t possess.
“I’ve always had a bit of a dicky heart, love,” doesn’t help. Neither does, “No one ever mentioned diabetes, maybe your test is wrong.” Or the most perplexing question, “If the doctors change my medications, doesn’t your computer know?”
Each week, I spend hours chasing health information to reconcile the facts. The “dicky” heart needs a defibrillator. The diabetes diagnosis truly went unnoticed. The medications have been changed thrice at three different hospitals. My computer couldn’t possibly have kept track, even if the traffic of information were limited to the public hospital network. Once a patient straddles the public and private hospital systems, it’s impossible to keep up. This issue must really hamper GPs who are charged with whole-person care but battle to obtain timely information from anywhere.
My frustrations being far from unique, one would have thought that the entire medical profession, and indeed patients, would have sighed as one with relief when the Australian government announced the creation of the My Health Record, a digital repository of health information stored in one place. Finally, doctors could have their information and patients could bypass stress, making healthcare more efficient. Alas, the reality has been quite different. The initiative was welcomed at first but each passing week now witnesses a groundswell of opposition that may force the legislation to be revised.
First, the facts as they currently stand:
- A health record will be created for every Australian who does not opt out before October.
- Any record closed after this date will be inactivated but remain digitised until 30 years after a person’s death.
- Individuals can control what information is uploaded and who can access it.
- However, the system operator, the Australian Digital Health Agency, can release the record for several reasons. Under section 70 of the My Health Records Act 2012, the agency can disclose health information when it “reasonably believes” it is necessary to investigate or prosecute a crime, to counter “seriously improper conduct” or to “protect the public revenue”.
- The health minister says it is the policy of the Australian Digital Health Agency not to release My Health Records without a warrant but this is not guaranteed in the legislation.
- At the moment, the law requires a warrant for release of a person’s medical information.
The opposition started slowly. The first story I heard was from a patient’s daughter when he had left the room. She revealed she was opting out on the advice of friends. Her cancer-ridden father couldn’t afford to pay her university fees and she had put herself through her studies by becoming an escort. “One high-end job got me through two weeks of bills, but it’s not how I want to be known.” I didn’t feel the need to respond.
The next week, a man told me that the marriage equality debate had been so bruising that he didn’t have the headspace to decide the ramifications of accidental disclosure of his gay status to external agencies. His pain at the lack of recognition and his worry about being judged was evident but the loudest advocates of the health record were still saying that opposition was a “fringe” issue. So, I sat back.
Then, I ran into a GP and as we waited to buy lunch, he groaned that the government had sent him cartons of promotional material, which prompted me to ask his opinion on the health record.
“I have depression, I opted out on day one,” he shrugged, explaining his fear that his competitors as well as other institutions might use the information to harm his business. He was happy to see his psychiatrist, but why should others view him through the prism of mental illness? As for the promotional stuff: “I threw it out. I can’t tell patients to stay in when I am opting out.”
That same day, I met a doctor who believed that given his rare illness and its niche management, he needed a health record. And another who was on the fence, torn between believing in the idea and trusting in its implementation, who said that the only advice she could give her patients in good conscience was to read the fine print for themselves, but she feared their inertia.
Since then, politicians, lawyers, human rights groups, and cybersecurity experts have weighed in while I have kept listening to the people I work most closely with, healthcare professionals and patients. Most support the idea of a comprehensive and accessible health record. People aren’t stupid, they know the importance of updated medical information and their inability to remember the minutiae.
What they object to is being called stupid because they have concerns about the privacy of their data. But these concerns are legitimate. We should be guarded about an abortion, divorce or disability on which a court decision might turn. We have every right to be wary about how an insurance company might view our history of depression or our recent unsuccessful attempt at pregnancy. We are right to ask why the tax office needs to know if we have dementia, impotence or back pain. When patients reveal their innermost secrets to a doctor, they trust in the doctor-patient relationship, not in the doctor-patient-government or the doctor-patient-tax office relationship. Still, the accusations of fear-mongering continue.
In light of the recent hacking of the health data of an advanced nation like Singapore that even caught its prime minister, the disgraceful funnelling of private information by Health Engine, and the coding error within the NHS that resulted in the release of confidential patient information, it beggars belief that Australian patients are being ridiculed for even thinking that their data could fall into the wrong hands.
This, when the government’s own former digital transformation head said if he were Australian, he would opt out and cybersecurity experts have stated that when it comes to data breaches, there is no such thing as a 100% guarantee. Patients deserve credit, not condescension, for agreeing.
My final patient for the day is an octogenarian whose children want her to have chemotherapy but who is concerned about its impact on her independence. I tell her that there is no guarantee of success and describe the inherent risks although I sympathise it would be easier if I highlighted the benefit and glossed over the risks. But I have seen that it is the explicit acknowledgment of problems and how it will be mitigated that creates trust and permits patients to say, “Despite the risks, this is in my favour.” Outright denying risk is unethical, unrealistic and bound to cause harm.
My patient says that armed with the facts, she will think carefully about how my advice applies to her circumstances. In other words, she realises that it’s not simply a case of staying in or opting out. I can’t help thinking that this may be the missing link when it comes to the great Australian debate about what to do with the My Health Record.
- Ranjana Srivastava is an oncologist and Guardian Australia columnist