App technology can fix the e-health system if done right
October 29, 2015 2.30pm AEDT
Health Minister Sussan Ley wants people to be able to access their medical data using an app.
Author
Director of UWA Centre for Software Practice, University of Western Australia
On Wednesday, federal Health Minister Sussan Ley announced two new trials of the so-far-unsuccessful, personally controlled electronic health record – rebadged as “My Health Record”.
These will run at the start of 2016 in rural north Queensland and the Blue Mountains in New South Wales.
The key difference from the current system is that enrolment has been switched to opt out rather than opt in. This means any of the one million patients included in the trials who don’t want their data shared will have to actively ask not to be part of the system.
Ley also suggested that patients should be able to make their health records available to third parties and app developers to facilitate the management of their own health.
She said, for instance, that were the data incorporated into an app, a doctor could use the technology to remotely monitor their patient’s blood pressure or insulin levels.
Politicians likely assume the simple combination of apps and data will lead to the same type of transformation in health that taxi and accommodation companies like Uber and Airbnb have achieved in their respective industries.
While a younger generation may indeed want to interact with health care in the same way that they stream a TV show or hail a taxi, it is optimistic to assume this transformation will be brought about simply by making My Health data available to app developers.
Challenges of app technology
Being able to use data meaningfully requires it be collected, managed and made available in very specific ways. Advocates of making government-owned data publicly available have outlined eight principles that should be met to ensure this can happen.
These highlight some of the challenges that need to be overcome before anything practical will come out of using information from the electronic record.
One of the most important of these principles is the need for data to be “complete”. This has been a major problem from the beginning with the entire concept of My Health Record.
Because the contribution of data to the electronic record is up to individual clinicians and limited by the systems they use, there are no guarantees there won’t be gaping holes in the information. Using the data to make clinical decisions would then be almost impossible without the missing pieces.
Another challenge is that for data to be understood by apps, it needs to be “machine processable”. In other words, it needs to be understandable by computer software, which traditional medical data simply isn’t. A letter between a GP and a specialist, for instance, might declare a diagnosis buried in everyday language.
It is a significant challenge for a software program to uncover this type of data. Unfortunately, a great deal of health information about patients is still in the format of letters and documents that limits their usefulness to apps.
Positives of the new plan
Although there are significant challenges to making data within My Health Record useful in the management of a person’s health, the move to make it more open is positive.
The very act of making health data visible to the patient will force providers to produce it in a more structured way. It could also put pressure on those who may not be publishing data into My Health Record to find a means of doing so.
But if people are going to be allowed to decide who has access to their data, this should automatically be extended to making it available to researchers. The government has long made it difficult for researchers to access population data from the Pharmaceutical Benefits Scheme and Medicare systems.
Patient data should be underpinning the management of their health on a continuous basis. The information should follow the patient in any journey that involves interactions with health providers or the health system in general.
Instead, it is locked up by health professionals, health organisations and the government. Very little of this information is available to the patient and certainly not in a form that allows them to make use of it in any meaningful way.
In fact, doctors have in the past taken a view that patients should not have access to their own laboratory tests or radiology reports because they would be liable to misinterpret them.
The principles behind sharing patient data should be encouraged. But the government’s attempts to implement this as the personally controlled electronic health record have so far been poor.
The technology, as it currently stands, would prevent the effective use of the data it might contain. Allowing for the data to be extracted practically and effectively would be a positive first step and one we can only hope the government will take.
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To me the bottom line is that - given the PCEHR is presently aggressively user hostile as far as the handling and presentation of the information contained - and even worse a huge amount of the information is hardly presently computable, to make this vision happen would basically require a re-design of all the systems feeding the PCEHR and then re-design on how the information is held, presented, displayed and secured.
The ‘done-right’ in the headline is an utterly non-trivial problem that could take decades to design and implement to deliver any utility and doing this will hardly be free. I wonder who might be in the gun to pay?
David.
What a simplistic question: "I wonder who might be in the gun to pay?".
ReplyDeleteYou know what the answer is. The Government is in the gun to pay - always has been, always will be. They have the money, they think they have the need and they know they don't have the knowledge, skills or expertise.
Consequently, big vendors will offer big solutions for a big price and Government will readily pay huge sums in the misguided belief they are doing good and will get the systems they think they want without really understanding what the problem is that they are wanting to solve.
So, the Government is in the gun to pay and the major vendors / consulting firms will keep on bagging the dollars. It's always been that way and always will be because Government will follow the processes and procedures they have always followed and the result will be the same..
I don't think Sussan Ley and her advisers have any idea of the minefield they are blindly walking into.
ReplyDeleteIf your bank stuffs up and makes a mistake transferring money from one account to another or sends your money to the wrong person, it can be reversed and compensation is relatively easy to work out and is probably not particularly onerous.
But when it comes to health information that's a whole different ball game. Privacy is one aspect, but by no means the most critical. If someone makes a decision based upon incorrect data, then the consequences can range from no impact when one is expected right through damaging a person's health to killing them.
You can't easily reverse death and financial compensation can be considerable.
Watching the courts work out responsibilities and penalties will be interesting, but the moral and ethical buck should quite squarely land on the desks of Sussan Ley and her current advisers - the ones who are making the system opt-out and who are allowing Australian's health data to be freely available to all and sundry.
And blaming the patients, by claiming that their health record is "Personally Controlled" is a nonsense.
Bernard said "I don't think Sussan Ley and her advisers have any idea of the minefield they are blindly walking into."
ReplyDeleteThe basic problem in all of this is that Sussan Ley not only doesn't have any idea of the minefield she cannot be expected to. She is totally dependent on her advisers and therein lies the rub. If their advice is deficient, faulty and politically risky, overly zealous, technically shallow and strategically inept the Minister will be on a hiding to nothing.
The hard questions leading to successful ehealth outcomes and runs on the board have never been asked. The reason is because the questions are hard, very hard indeed, and the brain hurts when formulating them and seeking razor sharp answers to them. Unfortunately Ministerial advisers are lacking in that capability.
Under our system, as minister, she is responsible. If she only listens to one set of advisers (in this case the PCEHR proponents) rather than others in her department and her non-departmental advisers then she is rather foolish.
ReplyDeleteThere is a wealth of dissenting opinions in the responses to the Con-Op, to the eHealth Bill and in submissions to the senate committee currently reviewing the eHeath Bill, not to mention Phillip Ruddock's committee. The fact that these dissenting opinions exist should ring alarm bells.
Anyone who hears only one aide of the argument when it comes to something as complex as eHealth deserves everything they get.
The Minister may have been simply reading from the brochure, but at some stage soon she will have to grapple, seriously, with the issues raised in Volkswagen and the Real Insider Threat.
ReplyDeleteWhat can we do to ensure that the systems designed to oversee the most important sectors of our economy—healthcare, financial services, construction, the automotive industry, and others—cannot be subverted to nefarious ends?
Financial services have, and continue to, invest much in identity assurance, because banks stand to lose a lot if their systems are subverted. So, what do health systems stand to lose if they are corrupted from the inside, or weakened by ineptitude?
The Royle Review recommended
ReplyDelete29. Enable a single sign-on capability that enables simplified usability as users of the systems are able to seamlessly pass from one system to another.
and
25. Review the NASH platform with a view to evolving the platform to align with the recommendations for Digital Identity that is included in the Coalition’s Policy for E-Government and the Digital Economy.
Note that reference to "Coalition’s Policy" a very odd place to let slip the partisan bias.
Who knows what "single sign on" means in the real world of Govt services? A little light on the proposal may be found in Independent audit of public service finds APS is burdened by red tape and risk averse culture
"The four main regulating entities, the Department of the Prime Minister and Cabinet, Attorney-General's Department, Australian Public Service Commission and the Department of Finance have already made a good start on progressing some of these," she said.
Jane Halton, then, would be aware that Identity & Authentication Management must be a conjoint project, across several Depts and entities to achieve the kind of functionality that enables APS top managers to flit effortlessly across domains in order to effect their efficiencies. Where was Ms Halton when proposals for IAM arose from within Health so that the NEHR could be grounded properly?