The Wealth Industry

Your medical data will help unlock the secrets of countless ailments and cures, generating billions in profits. So shouldn’t you share the spoils? By Fred Pawle.

Like their 19th century predecessors staking claims over goldfields, modern prospectors are lobbying to get their hands on piles of raw medical data, knowing that buried within them are billions of dollars in profits for anybody able to cash in on the revolution in medical technology.

To paraphrase the catchcry of the last gold rush, there’s gold in them pills.

The amount of data is enormous - zettabytes being created every year, increasing exponentially - within which are the secrets of predicting, preventing and curing diseases that have ailed humanity for millennia. Nobody knows what information the data will yield - hence the term “data mining” - only that it will. 

This is not the only personal data being created by the zettabyte. Computers are also recording our online behaviour and mobile phones are tracking our movements. But this data reveals only our consumer and political predilections. Medical data, combined with microbiology and genetics, is infinitely more informative and profitable.

For example, cross-referencing a variety of environmental and genetic factors with, say, hayfever or even cancer might not only unlock the cause of the condition but also a cure. Until now, only the environmental factors have been available, and even then they were limited. Computers, growing at the same blinding rate as medical technology, have finally made crunching the numbers possible.

Medical data in Australia alone has been estimated to be worth $40 billion to $50 billion, and growing. This has created an urgent dilemma for regulators. Who owns the data in the first place - the patient, the company that collects it, or the government? And what rights do people have to retain privacy?

A class-action case was brought in the District Court in Chicago this week that will eventually provide some guidance for policy around the world.

It is a groundbreaking case. It involves records obtained from the University of Chicago Medical Centre by Google, which were meant to be stripped of details that would identify the patients involved. The plaintiff alleges Google left details in the data that could, using its extensive existing data, link it back to the patients it came from. This would be a breach of privacy, prohibited under the agreement between the centre and its patients, as well as profiteering from data whose ownership remains uncertain.

Given the regulatory ambiguity in this field, and the often conflicting interests of consumers and corporations regarding data, this is unlikely to be the last case of its type.

In a report two years ago about the burgeoning data industry in general, the Productivity Commission said reform was urgent and would benefit both consumers and companies. It recommended joint ownership of data to enable consumers to “share in the benefits”.

In a subsequent address to the National Press Club in Canberra, Data Governance Australia chairman Graeme Samuel disagreed. “While the move to open data should be encouraged if we are to truly realise the full value of data to our society, there are serious concerns whether private business would continue their investment in data under a joint ownership of data model,” he said. “This is likely to ultimately stifle innovation and value-creation and weaken Australia’s ability to compete globally.”

The data industry is not the only one feeling the heat as a result of uppity consumers. The authority of doctors is also being seriously questioned.

The medical profession has had a paternalistic attitude towards its customers since Hippocrates (460BC-370BC), the father of Western medicine, said physicians should conceal “most things from the patient”. The attitude of doctors, beguiled by their own power, has since then been to divulge information only when it suited them. Patient records have always been considered the property of the practitioner, not the patient.

This creates enormous potential for conflict of interest should that data then be shared with pharmaceutical companies. The risk of doctors prescribing patented medicines in return for kickbacks - or even being pressured to do so by an employer - has always been high, and is now getting higher.

In The Patient Will See You Now, US doctor Eric Topol says doctors suffer from a “sense of supremacy” and their authoritarian tendencies are “self-perpetuating”. He says technology will “democratise medicine” by each individual having unfettered access to all their own medical data, allowing them to participate in decisions about their own wellbeing.

The federal Government is trying to take the initiative with MyHealth, a nascent medical record system that crashed last year when people inundated it to opt out before a deadline. In the end, about 10 per cent of eligible Australians, or 2.5 million people, opted out of the system, and it is now operating relatively smoothly.

The news feed run by its administrator, the Australian Digital Health Agency, is constantly updated with reports of new clinics joining the system, giving patients access to their own records. The ADHA also ensures the data is not breached or used improperly.

But MyHealth is more like a digitised record of a patient’s past conditions and treatments. Compared to the data mines the medical industries and companies like Google are prospecting, it is barely a hole in the ground. The future of medicine, in which profitable, responsible companies deliver unimaginable health benefits to all people, is in far more complex data.

Australian regulators need to provide better guidelines if our nation is not to be left behind in this medical revolution.