Jurisdictions are ‘where the rubber hits the road’, hears the annual Sparked Symposium.
The states have a unique role in implementing interoperability standards, but they also have their limits, said speakers at this week’s Sparked Symposium.
The purpose of the Sparked accelerator, coordinated by the CSIRO, was to create a core set of FHIR standards for Australian settings, and its members include Australian governments, the Australian Digital Health Agency and the health technology industry.
“We’ve got health providers from public and private, we’ve got our industry partners, we’ve got our academics, we’ve got government, and we’re all actually now working together to solve the big problem,” said Dr Raelene Donovan, acting chief clinical information officer at eHealth Queensland.
The states have a unique position, according to panellists.
Dr John Lambert, the CCIO for Tas Health, said the states and territories have a leadership role to play in giving consumers a say in what happens to their information, noting that while the jurisdictions were few in number, “we do have an outsized weighting in a lot of the conversations”.
“We don’t represent private sector medicine, which is where the bulk of care is delivered,” he said.
“We don’t represent primary care, we don’t represent aged care, we don’t represent private hospitals and allied health practitioners, but we do have a fair voice, and we directly connect with the federal government.”
Prior to the digital age, consent was easier, he said.
“I go to a practice, I know they’re writing my notes on a piece of paper. I know that piece of paper generally stays inside the practice, so implied in my attending that clinic is that they’re the only people who are going to see my information.”
With national data sharing, that all changed, he said.
“As a clinician, I think it’s bloody amazing, but it also requires a much higher level of responsibility on us to constrain that information where it’s appropriate, to constrain it.”
Failure to give patients enough control over their own data was possibly behind the low take-up so far of My Health Record, he said.
“And the My Health Record is one of the best systems. It has probably the most granular consent model at document level of any of the systems out there, but I think we need to do better,” he said.
Related
“When you add them all up, it’s about 10% of the population, the people with unique needs, the people who don’t want their information shared.
“So I think our job is to recognise that, respect the wishes of the consumers, aim to build something that will meet their needs.
“We’re not going to be able to do it next year. We’re not going to be able to do it in five years, in my opinion, but we should aim to be doing it in the next 10-20 years.
“We’ve had decades of attempts just to do interoperability, which is kind of simple compared to consent in some respects,” he said.
“Interoperability is a team sport,” said Dr Marc Belej, principal at Marble Consulting.
“Each jurisdiction is going to have its own unique flavour of applying the standards and achieving the clinical objectives and the improved clinician and patient experiences that we all want.
“So that takes time. It takes being opinionated and being willing to accept criticism, and so out of that comes the agreement.”
The conversations were complicated, he said. Having the differing viewpoints was what led to good solutions for each specific demographic.
“We have a small part to play in patient care. Let’s just be frank,” said Kendall Hockey, director of clinical repositories and integration services at eHealth NSW.
“We want to keep people out of hospital.
“So I think the outcome we should think about is, can we actually improve health outcomes with what Sparked can do and offer? And I think the work around aged care is a great example of that.
“That’s a challenging space. But I think it’s what we can do and leverage as a group. We should be looking to say, okay, who’s doing what? … So we actually all contribute together, and we’re not all doing the same thing, because I think it’s fair to say we’re all under immense pressures for time, resources and funding.
“We really have to focus on what’s important, that really has an outcome-driven component.”
With Epic rolling out across NSW, Mr Hockey said the state would be the world’s largest customer.
“Technically, that’s wonderful, but unless it has actually significant patient outcomes, the question is why.
“We’ve got to really focus on keeping people out of hospital where we can.
“So, how do we share relevant information where appropriate?
“Primary care networks, allied health, is a great example. Those other areas are really the ones we should be working closely with to say, well, okay, what is it that you need to make your life easier than we don’t do today?”
Western Australia was held up as an example of early adoption and leading in digital health, especially with its coded discharge summaries and use of SNOMED.
Jeff Ewen, principal solutions architect at Health Support Services (WA health system), said his state was “forensically examining the consent data model that’s within FIHR for use of adopting that to equally implement as a central repository of consent for the different things”.
That included patients limiting access to sensitive data, and using health identifiers and authorisation to verify a doctor’s identity when providing virtual care.
“Our aim is to provide the clinical teams, that we can accurately identify, with all of the relevant information to help them treat those patients,” said Mr Ewen.
“But it comes with all those requirements about being able to both have an authorisation store, an API management to say that we only expose them to the data they want, or we give them as much data as they need to make that clinical decision.”
One of the challenges with FIHR data models was to make sure they used terminology that had relevance to clinical teams, he told the symposium.
“We’ve also got to maintain [data set] utility to those people who are providing the care… Data has to travel backwards and forwards between different people without it changing the clinical context of that data and the terminology basis and the classification models. And the data sets shouldn’t be putting that maintenance of clinical contents at risk,” said Mr Ewen.
“It’s a wonderful conversation to be having. We’re having a conversation about what we can do, not what about what we could do, and that’s a very good place to be.”
When asked what they needed to build on the work already done each state presented a unique perspective.
Dr Raelene Donovan, acting CCIO of eHealth Queensland, said ongoing investment and funding now needed to be considered to ensure long-term maintenance of the work being done at present.
“It’s not set and forget,” she said. “That’s probably one thing that’s front of mind for me; the longer term plan around this.”
Setting up good governance was an important part of this, she said.
“When you’ve got good structure, good processes, good governance, it helps things move through, and it helps implementations, in particular, go well.
“In terms of developing standards, governance is the same. You’ve got to continually review, update, make sure that you’re staying up to date and it’s delivering what you need it to do, which is structure, processes, decisions, responsibility, accountability, etc.”
South Australia’s Dr Belej said Commonwealth funding had contributed greatly to the state’s progress with interoperability. And he said influencing vendors was paramount.
“There aren’t that many vendors and solutions in the marketplace … requiring our vendors to meet the minimum bar of interoperability, to get along to HL7 Connectathons and test their solutions, from my own perspective, particularly against the SMART launch track, those are things that will really provide the evidence base that shows that interoperability works.”
“The next focus is, what are the next steps?” said Frank Patterson, manager of ICT Policy and Digital Health Innovation at Health Support Services (WA health system).
“I know we’ve got the roadmap for that, but where are we going to get the best bang for the buck? Who are we missing?”
Stakeholder engagement was unprecedented, said Mr Patterson, and engagement at senior levels was really helping.
“Let’s not lose that. It’s a unique time… The penny’s finally dropped, and we need to work together, otherwise there will continue to be significant barriers. But we need to make sure we’re not leaving anyone behind.”
