At the HIMMS conference last month in Orlando Florida, the US government announced its intention to mandate that health providers must move towards being able to provide their patients with free and unfettered access to their data electronically, upon request. To achieve this, the US government would end up mandating that FHIR would have to be integrated into all healthcare provider systems.
While the US healthcare system has fundamental differences from the Australian system, and is woeful in parts, where interoperability, data sharing, and patient access is concerned, virtually all governments around the world are aligned in a common cause.
Interoperability and seamless secure distributed data sharing are the secret to transformational changes in cost, efficiency and safety in every healthcare system.
But if the goals are common, the means to achieving interoperability and data sharing nirvana, is being approached very differently around the world.
Until now, FHIR had been adopted on a voluntary basis in the US. But many believe that this non-compliance framework led to “information blocking” – when a healthcare vendor or provider interferes with the ability of electronic health records (EHR) to be shared.
There are legitimate reasons for information blocking, such as system security. But in the US, many healthcare providers have been using blocking to prevent patients moving to another provider, and vendors have used it to keep providers in their tech stack camp by making data migration very hard.
Blocking was starting to become a major obstacle to the development of effective interoperability in the US.
In Australia, you might argue now that the My Health Record (MHR) is a form of answer to the data sharing and distribution issue. The idea of the MHR is free and unfettered access to patient data for the patients themselves, and, if the patient agrees, with their providers.
Because our healthcare system is set up so differently, “information blocking” is a far less obvious phenomena here. But there are plenty of examples of providers and even vendors in Australia frustrating better data sharing for commercial reasons.
The big pathology companies have notoriously held onto their bespoke secure messaging systems, knowing that moving to a common system, as the Australian Digital Health Agency (ADHA) would like them too, might break down their established reselling chains downstream with GPs. And although no local GP patient management system vendor actively tries to prevent data sharing these days (some have in the past almost certainly), one of the major obstacles to, and cost in, changing vendors, remains data migration and integration to other systems.
The US government’s move to mandate FHIR as a standard that all providers and vendors must now adopt to meet sharing standards, is a stake in the ground where the biggest healthcare providers and the biggest health tech vendors in the world, are making a sharp right hand turn, whilst Australia appears to be travelling left.
The US is forcing compliance to a common universal sharing standard, which will, in theory, enable all providers to talk to each other, and to patients, from distributed databases around the country. Eventually it will sit on the in/out of every system as the universal translator.
It’s not really that radical. It is the way of the cloud and data sharing for nearly every other major market undergoing digital transformation these days.
In Australia, it looks like, going down the compliance standards path of the US, is still some way off. One excuse could be made that we now have the MHR in the middle, where we ask every patient, doctor and vendor to talk centrally to the government’s centralised database (honeypot?) of 90% of our citizen’s data (the other 10% having opted out).
The MHR way is a sizeably different proposition now to where the US is heading. Technically it is also flawed in terms of future proofing our health system with an effective interoperability regime.
But compliance in sharing standards is a highly vexed issue and probably a lot harder in Australia for a host of reasons.
As an example, local tech vendors simply wouldn’t have the bandwidth of capital and profitability to move rapidly to a new and narrow compliance regime in a short period of time.
If we went down a forced compliance path at this stage in Australia commercial arrangements, power structures and people will hurt in a whole lot of ways . And that’s if that standard actually works – FHIR is showing promise, but many experts will say it’s not there yet.
For the US government, the decision can’t have been easy.
But it’s much easier for them than Australian governments. In the US, the government is the funder only for healthcare providers. They have an easy objective – reduce cost, increase efficiency. And rapidly improved data sharing is a big secret to this efficiency issue.
In Australia the government is both the funding body and the service provider. The conflict is palpable, and a lot trickier to navigate.
States fund hospitals, but ultimately, via the Federal government, and the federal government funds the rest of healthcare – mainly GPs – through the MBS. Hospitals have different performance goals for their funding to doctors and are much more in the hands of administrators than clinicians. The two systems don’t do a lot to encourage smooth communication between the two sectors. And the states directly employ a lot of people, introducing a lot of politics. Change could be very hard here.
But should we be giving stronger consideration to, somehow, biting down on this bullet?
Where we are may, in large part, explain where we find ourselves with the MHR. In some ways it’s the interoperability and patient data sharing strategy you have when you aren’t properly committed to one. Not an effective and modern one anyway. It pays a lot of lip service to the future of patient empowered data sharing, and provides a show project that government can point its constituents to and say , ‘see, we are serious about transforming the health care system’.
But in technical terms, in security terms, and in the end, in terms of actually empowering patients properly, distributed healthcare provider systems, seamlessly and automatically sharing data between providers and providers and patients, via a web sharing technology like FHIR, is the future, no matter what happens.
The US blocking rule decision seems to expose our MHR as a shag on a rock as far as the rest of the world’s direction on interoperability is concerned. At least if you are serious about transforming your healthcare system through interoperability and seamless data sharing.
That is not to say the MHR is a useless project and should be scrapped. We’ve learnt a lot from it. It has focused us all on the importance of data sharing, patient empowerment and interoperability. And it now has a fair bit of useful data that would be hard for any FHIR enabled distributed system to get.
But there must be some middle ground where we can move a bit faster to what we know will be the best technical platforms for the future. Even ADHA acknowledge that the MHR is now platformed on a technology that isn’t going to facilitate it into the future. And they are running to try to change that.
If the most technologically advanced and biggest healthcare market in the world is making a sharp shift away from the way you are doing things, we should be asking ourselves a little more seriously – why? Even given the structural and political difficulties we face with our current trajectory on secure messaging, the MHR, and our federated system of healthcare funding.
The US decision is landmark. We should now spend a bit of time looking at the implications for Australia and our current interoperability strategy.
So far Australia is opting for non compliance in data sharing and interoperability. The political narrative is that we should wait and see how compliance fares in the US. Don’t rush in. And…maybe our system will naturally evolve that way, especially in respect to the sharing standard FHIR.
Everyone likes to love FHIR. But no one in Australia wants to commit to it. And as long as that happens, we risk any progress we’ve made (and we have made some, even with the MHR), stalling.
Some will make the argument that an ex US vice president famously made before the second Iraq war, “you don’t know what you don’t know”. Maybe the US decision will turn out to be a mess. We should wait. We’re doing OK.
The US could end up messy, much as other big government driven decisions on healthcare such as the ‘Affordable Care Act’ turned out to be a few years back.
For starters, while the decision is only a proposed new rule, the powerful lobby fraternity in the US, for all sorts of interest groups – patients, vendors, doctors, but mostly, the health insurers – will have a chance to water it down, or just have it bogged down, as happens so much in US politics these days.
But if you look at the technology, and every other market, where data sharing and analytics has created massive productivity and transformation for vendors and consumers alike, some stuff is bleedingly obvious. Even for that very complex, risky and emotional market of healthcare.
We should do our best to not end up looking back and seeing more avoidable waste created. The MHR should have taught us to be this careful now.
We should at least be talking about a common regime for standards and governance, and, be trialling some regions with the blessing ,and pilot funding, from the states and the federal government.
One day, healthcare will be conducted more or less seamlessly over the web between providers, patients and doctors. And we won’t be holding patient data centrally. It will be distributed far more securely among providers, and patients will only engage with those they need to, when they need to, and not have their healthcare record cluttered with lots of non-structured data that is potentially adding to confusion around use.
We don’t want to look back and say we took 10 more years to get to this obvious future than we needed to.
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