It seemed like such a good idea: a digital vault for all of our health records accessible by a variety of healthcare providers. But for all of their promise, digital systems like My Health Record risks letting down the very people it could help most unless we acknowledge what makes a disease a disease.
Any database of personal health records has to deal with two fundamental problems. One is a fear that healthcare providers might act less as an advocate for our personal wellbeing, and more as a gate keeper who judges our right to treatment.
The second problem involves the very definition of disease itself, one we rarely give a lot of thought to. Disease is more concerned about our morality than our physiology than we’re comfortable admitting.
Not that these are entirely discrete topics. Many of us face a constant fear that our flavour of suffering isn’t viewed as an illness, so much as a form of corruption. Perhaps even criminality. The history of medicine is rich with examples of diseases that have their roots in sin and have failed to completely divorce themselves of a legacy of immorality.
LGBT conversion “therapy” is but one tragic example; a modern exorcism dressed in a psychologist’s robes. As treatment, it adopts legitimacy, robustness and a veneer of charity. You’re not bad but you are broken, and society is obliged to repair broken physiology.
Even legitimate medical conditions suffer from this stigma. As far as loss of life and wellbeing goes, lung cancer is up there at the very top of the oncology list. Around 9,000 people are expected to die of lung cancer this year – three times breast cancer’s mortality rate. Yet it receives just one-fifth of breast cancer’s direct funding.
A lot of decision making goes into every funding dollar, taking into account factors such as likelihood of success and the state of current research. But among them is a rather simple bias. Lung cancer is associated with smoking: a vice. And therefore, there is a sense of just desserts that makes it harder for us to part with our charity.
A record of our health is more than a map of biology. It’s a measure of our actions, identity and values. For those with mental illness, or whose lifestyle isn’t dinner party conversation – for those dealing with addiction, or who are overweight, for example – that record all too readily demands a level of accountability we wouldn’t expect of others.
In a conversation with Professor Nicholas Lintzeris from the Division of Addiction Medicine at the University of Sydney, I gained a sense of the consequences of this distinction for some. “You end up being treated very differently by the healthcare system once you are identified as being dependent on prescribed medication.”
Therapeutic trust is the variety of trust a person might be forced to embrace when they hand a valet the keys to their beloved Porsche. It’s earned not by reputation but by a hope in the system.
“You might have that level of therapeutic trust with your health provider,” says Lintzeris. But as that circle expands, from a familiar local doctor who’s followed your epic struggle, to an unknown emergency room locum who is deciding whether to administer an opioid for your broken leg, that therapeutic trust will eventually be tested.
Trust in healthcare providers as advocates goes beyond the morals of addiction. Think on the STI an ex gave you. That ongoing impotence. Maybe even the complications from an eating disorder or a suicide attempt. Thanks to the way we define disease, a detailed history of our health becomes a record of worth.
Whether or not we should trust the medical system to advocate for our personal wellbeing is a debate worth having. But it is also beside the point. Many don’t trust it, whether for lack of resources or want of empathy, and that itself is a problem when it’s a matter of public health. Sadly, these are all too often the very same individuals who would benefit from a process that stitches together scattered details to provide a clear medical history in times of need.
These are people with addiction who wrestle with mental health challenges. They are sex workers who are anxious to protect their bodies, people whose obesity has given rise to complications beyond count. They are more than a statistic of one in 10 – they are our friends, sisters, cousins and grandparents.
My Health Record is a vault for our most personal, intimate possessions that leaves copies of the keys in others hands. The tragedy is that as an opt-in system, there might have been a stronger impetus to build trust in those who hold the keys from the start. As it stands, those in charge have a monumental challenge earning that trust from those who could benefit from just such a scheme.
Mike McRae is the author of Unwell: What Makes a Disease a Disease?