The furore in the past fortnight over whether My Health Record should be opt-in or opt-out misses the point. Once the security concerns are fixed, there should be no “opt” at all. Everyone who uses Medicare or the PBS should be in My Health Record whether they like it or not.
Australia seems to be increasingly infected with the US contagion of an instinctive distrust of government so strong that people believe everything government does is bad and that no government would be better than any government.
It is a very destructive position.
Data, kept by government or in the private sector, is more often a friend than a foe.
Yes, it can be misused. But the answer is not to block its collection and distribution, but to make sure its collection and dissemination are secure.
The advantage of My Health Record most often cited is that it provides accurate details about individual patients to health providers, thus preventing, for example, the administration of drugs to which the patient is allergic, or administering incompatible drugs or other treatment that might clash with the patient’s past treatment.
But the value of My Health Record could be much greater. With modern computing power the data could reveal astonishingly useful stuff – things like cancer clusters, the effectiveness of drugs, and geographic prevalence of disease. Even drug incompatibilities or bad side effects could be detected well before case-by-case events bleep on the radar.
Stripped of individual identification the raw data of every interaction between people and the health system would reveal correlations, possible causations, trends, and lines of further inquiry that could lead to better treatments and avoidance of bad ones.
However, if people are allowed to opt out or fail to opt in, the database would become biased. In particular, socially disconnected and disadvantaged people are unlikely to opt in, and careful, fretful people would opt out. The remaining database would then not be reflective of the whole population.
If anything My Health Record is not comprehensive enough. A lot of the record relies on the patient manually inputting events and treatments.
It should be more automated. Virtually every health transaction goes into a computer somewhere, so it should not be too difficult to have them all automatically transmitted to each patient’s MyHealth account.
The Australian Taxation Office does it using the same MyGov portal as My Health Record.
The ATO automatically gathers wage and salary information, interest payments from financial institutions, share dividends and share and property sales. It then puts the information into the taxpayer’s electronic tax return.
That sort of data gathering is useful. Honest taxpayers get reminded of income and do not inadvertently overlook something, and dishonest taxpayers lose the excuse “I forgot” or “I overlooked”.
Moreover, the ATO can use the resulting database to detect trends that undermine the revenue base – such as blow-outs in work-related claims.
Given that Medicare or the Pharmaceutical Benefits Scheme underwrite at least partially nearly every medical treatment in Australia, the public has some stake in what is happening. If treatments can be made better and poor treatments removed through better use of data, everyone is better off, with the proviso, of course, that misuse of the data is prevented and privacy protected.
Australia must avoid what is happening in the US. Since Donald Trump came to power the government has stopped gathering some data and restricted access to other data on political and commercial grounds.
A whole range of data relating to climate change is either not being gathered or not being made public.
Data on housing discrimination are gone. Data on breaches of workplace safety are gone because business does not like the naming and shaming. Animal welfare figures are gone because of business pressure.
Nearly a quarter of the 200,000 or so publicly available datasets have been removed since Trump came to power, according to The Washington Post. Some of them may have been outdated or consolidated with others, but other removals are plainly political, such as the dataset on ethics waivers to appointees, so it is now impossible to find out who was a lobbyist before being appointed.
You would think weather information would not be subject to interference. But aside from the climate-change attack, the Trump Administration would prefer the National Weather Service have fewer publicly available services so that various commercial outfits can sell weather information – information gathered by the weather service at great cost to the taxpayer.
Trump’s nominee to run the National Oceanic and Atmospheric Administration, which runs the National Weather Service, is Barry Myers, who is the founder and CEO of Accuweather which sells weather information.
It is a blatant conflict of interest.
The people in the weather service are in it for the mission, not the money.
What does Trump and Co want? That only people who pay for it get storm and typhoon warnings.
In all we should be more concerned about the Government not collecting data and not making it available (with appropriate privacy protections) rather than worrying about its collection.
This data is part of the common wealth and should be available, with identifying material deleted, to all who want to work with it. The integrity of the data and its usefulness is dependent on its universality, comprehensiveness and freedom from interference for political or commercial purposes.
MyHealth and the computing power behind it should be seen as a great opportunity to build a great medical-research database. It would be impossible to predict the full benefits.
It is too easy for politicians to play on people’s fears to score cheap points at the cost of denying the community at large such a tool.
Mercifully, in Australia, we do not have a system under which a huge number of senior public servants are political appointments who would be willing to purge or hide data for political reasons.
But if we import any more of the distrusting American attitudes to the role of government we will be the poorer for it.