People are worried Elon Musk’s DOGE might start defunding key agencies and groups that have developed and maintained vital healthcare interoperability programs in the US. What does that mean for us?
For over two decades now healthcare interoperability in the US has been one of the very few areas that the Republicans and Democrats have been strongly bipartisan about.
Both governments recognised the dire state of healthcare data sharing a long time ago and what better data-sharing infrastructure could do for the healthcare system and the economy. With that the two parties have worked effectively together through many transitions of power to build out significant interoperability programs, a lot underpinned by the major healthcare standards HL7 and FHIR.
This bipartisan position is a key reason that the US, through the Office of the National Coordinator for Health Information Technology (ONC), was able to introduce ground-breaking legislation to mandate cloud-based data-sharing standards for all US healthcare platform vendors and providers five years ago.
However, many are currently very pessimistic about the future of the organisation, thanks to Elon Musk and his new Department of Government Efficiency (DOGE) and are preparing for the worst, for it to be closed, or have its funding significantly reduced.
No one is saying anything publicly because no one wants to put their head up and be noticed, but the view is it’s more likely than not to happen. When asked directly, ONC leadership has maintained an optimistic outlook but they have not given a firm denial of the possibility.
ONC annual funding is only about $60 million per annum, a drop in the ocean of the overall US government healthcare budget, for perhaps the greatest return on investment of any healthcare program in history in that country.
But sources suggest that being small and reasonably obscure can make things worse (when you’re small you can fall between the cracks).
Significantly downsizing the ONC is likely to cause collateral damage to the entire US HL7 and FHIR organisation and community, which as a non-government organisation, is in the firing line of the very public position Mr Musk has been taking on all NGOs. Other NGOs that contribute to the digital health ecosystem are likely to be equally affected.
If DOGE does torpedo the ONC and the US HL7 organisations the disruption within the US healthcare system will likely be large over time as both organisations are involved in the maintenance of the interoperability infrastructure of the country, in particular the maintenance and constant development of key standards such as FHIR.
FHIR is more or less a living entity of toolsets for developers with much development work left to do for vendors and providers who are using it.
The HL7 group in the US also maintains servers for the FHIR development community at the cost of more than US$1 million a year, so someone would need to pick up this service quickly, otherwise a lot of countries, companies and groups using the resource would be left high and dry.
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Such a move in the US would also almost certainly reverberate through interoperability programs around the world, given the amount of work done in the US that is relevant to other HL7 and FHIR and other communities globally and the unique experience and know-how of the US group accumulated over the course of the last 20 years.
Nobody is yet prepared to go on the record with the possibility and repercussions of DOGE excising these core US interoperability groups in the name of budget efficiency.
Behind the scenes there is apparently quite a bit of talk about what would need to happen to maintain momentum of FHIR-based interoperability programs around the world and the US, and the talk sounds a lot like the current dynamic between Europe, the US and the Ukraine.
Interoperability standards groups outside the US, especially through Europe, are thinking already about who might fund this work without the US government and how they will be able to keep the momentum on overseas programs if these key US groups are defunded, or at the very least, significantly disrupted.
None of this looks likely to impact Australian interoperability initiatives directly in the short term.
Both the New Zealand and Australian HL7 organisations operate independently of the US group, although there are obviously some interdependencies on the development of intellectual property and the underlying publication tooling, and some key Australian HL7 people also work for the US HL7 organisation.
Australia’s FHIR and HL7 initiatives are supported and funded currently through the Department of Health and Aged Care and the Australian Digital Health Agency. Both groups are very happy with the programs they have in place to develop common standards and clinical coding protocol programs that can be used universally by software platform providers locally.
The clinical coding work in Australia is being done through the CSIRO-run Sparked program.
Australia is in the middle of trying to achieve something similar to what the ONC achieved in the US through the 21st Century Cures Act, that is, a situation whereby all software vendors and providers align on common standards and cloud-based technology to enable the meaningful sharing of patient data seamlessly and in real time across the system.
As a part of this initiative the Australian government recently introduced the Modernising My Health Record – Sharing by Default legislation to parliament, a set of laws that introduce some of the concepts of the 21st Century Cures Act, including that the government can start to mandate sharing standards and technology by law.
As a starting point the legislation mandates that our major private pathology providers have to upload all patient results in near real time to the My Health Record.
In the US some people believe that given that the services provided by HL7 and FHIR in that country underpin a lot of the continuing stability and development of the system of data sharing, that it might not be too long before the US government realises that defunding the organisation would end up creating significantly more cost than any savings achieved and a lot of unnecessary disruption.
Medicare and Medicaid are strictly off-limits to DOGE so if it somehow significantly disrupts healthcare through defunding groups like the ONC and HL7 and patient advocate groups get wind of what occurred it would not be good for the US government.
Certainly the sort of disruption that could occur in time could significantly impact patient safety.
The problem with all this might be that what the US government seems to be doing so far does not look like it’s about cost savings at all, or even politics. It looks more like some sort of ideological social engineering play to create some sort of new order in the US.
HL7’s FHIR product director Grahame Grieve gave a “state of the nation” presentation on behalf of the FHIR community at an HL7 Australia symposium yesterday, and was at pains to emphasise the open collaborative nature of the standards organisations, and how important that is to the digital health infrastructure we all need society to build.
He said:
“We greatly appreciate the significant contributions made to the HL7 and FHIR community by many individuals, companies, institutions, and countries, and particularly we thank the US government for its substantial contribution to the community and infrastructure we’ve built.
“These contributions are one way for us all to contribute to the civil organisations that make such a significant contribution to the peaceful societies that we benefit from.”