Technology has many roles in healthcare. For it to succeed, the infrastructure needs to be in place to enable the flow of information. We are grateful to have had the opportunity to talk to one of the world's leading experts in healthcare data technology, about how you as a patient can position yourself, to benefit from the changes taking place.
Hello Grahame and thank you for giving us the time to talk about what you are trying to achieve.
Can you tell us about your professional background, personal story and how you got involved in healthcare?
I was born in Australia but grew up in New Zealand. I graduated with a degree in Biochemistry and Botany with a plan to work on improving plant crop yields but first I decided to have a holiday in Australia. I quickly ran out of money, and was very lucky to get a job in a hospital laboratory doing clinical tests. I realised that healthcare was where I belonged, and I’ve been in it ever since.
Over the last 30 years, I’ve worked as a laboratory technician, a medical researcher, a developer of healthcare software, a healthcare IT product manager, and I’ve been a consultant to several national programs and many other software makers to help them exchange and use information across the healthcare system.
Given your extensive experience and knowledge in healthcare globally, what would you say the biggest problem in healthcare is today?
We have a system where each healthcare provider has a laser focus on best practice with regard to effectiveness and safety for the care that they provide, and I think that we’re well served from that perspective. But no one is accountable for overall outcome of patients in the same way. If a patient has a chronic problem, and especially if they have more than one, the different parts of the healthcare system don’t coordinate well with each other, and patients can easily fall into the gaps. I see that mental health is a particularly problematic area.
That’s true both in terms of organising healthcare - making appointments etc, but also true with regard to bigger issues like what your medications and treatment should be, and what the care plan is trying to achieve. Patients often end up managing this contention between different care providers themselves, and I think that in general, they’re the least well informed about the choices they end up having to make.
Around the world, people are obsessed with how healthcare is paid for - and that’s a real challenge because as a society we can’t afford all the healthcare that we would like. How we choose to ration healthcare says a lot about who we are as a culture. But I think that right now, there’s still plenty of improvements to be made in how we care for individual patients, and we need to focus on that problem.
What have you worked on to help solve it?
There’s lots of reasons why the different parts of the system don’t work well together, and lots of people working on those parts. I’m focused on one part, one contributing factor: how difficult (=costly) it is to make information about a patient available in the right place, at the right time, and in the right way. And when information isn’t available, and it takes too long to get it, care providers don’t have time to talk to each other.
So my focus is to improve the overall way that we can share information. That means technical standards, through the international standards process. The standards are deeply technical, and process is very arcane, and people find it hard to relate to, and to see the benefit. But the benefits are very real – for example, the things that smart phones can do are built on top of similar information exchange standards.
People’s eyes glaze over when I try to explain this, but it’s real, and those of us who work on the standards strongly believe that we’re making a real difference. But we also know that it’s indirect; the standards only have any impact when people use them, and build eco-systems on them. So we also work with governments, hospitals, and companies etc about how and why to leverage the standards we are building.
Can you explain FHIR in laymen's terms?
I’ll give it a try…
“FHIR” is the name of the standard we are working on. It’s an open standard, which means that anyone can read the standard and write software that follows it. It describes a way that different software systems can talk to each other about patient’s healthcare - both to find out what the state of health is and to ask each other for services related to the patient’s care. Given that the software represents people and organisations, the information exchange drives the care process - whether that’s administration, medication management, care planning etc.
FHIR is very much based on the latest web technology, which means that it’s easier to use for developers, since web technology has taken over the whole world for developers, and there’s tools and skilled programmers everywhere - though for programmers, actually understanding the healthcare eco-system and ethos takes time and really matters.
HL7 is an international standards organisation that is responsible for FHIR. Even the name HL7 shows how arcane this is (what on earth does it mean? The answer is meaningful to very few people). But arcane doesn’t mean irrelevant - existing HL7 standards are used by software in almost every healthcare institution in the developed world. Now we’re bringing our old standards into the latest web based world, and covering more of the healthcare process.
So why are Apple, Google, Amazon and Microsoft adopting HL7 FHIR standards?
These big companies look at the amazing amounts of money spent on healthcare, and think that maybe they should be more active in the space. But it’s a tough area to be in - any software you write has to cover such a broad range of functionality and you have to support it a long time before it becomes profitable. They’ve failed before, and lost lots of money doing it. Kudos to the current healthcare software providers, then - they’re actually pretty good at what they do!
Now these big companies think that the standards we are working on will open up the eco-system so that they can focus on doing what they’re good at - whether it’s bringing slick services to consumers, or helping enterprises understand their data - without having to understand all of healthcare and compete with the existing companies around their healthcare solutions. So they're excited about this potential and are adopting HL7 FHIR, and encouraging all the other software providers to do so.
What they’re going to do with the standard…. well, we’ll see. Irrespective, from my point of view, their interest is a good validation of our expectation that good information exchange standards have the power to change the world.
What do you want to see change in healthcare today?
I’m all about people working together. I want to see out healthcare providers being more nimble in this regard, and being more easily able to work in care teams based around the patient, instead of being in institutionally based care teams. Then I want to see doctors make the most of this and welcome the ability to work together more widely, and to be proactive in improving healthcare outcomes, not responding after the fact to problems.
How do you see the future of healthcare change in Australia and globally in 5-7 years?
The changes we’d like to see are scary for some people. Digital disruption creates winners and losers, and many people are primarily concerned to make sure that they’re not in the losing group.
I think that skilled passionate people won’t have to worry about that - we don’t have enough of them whatever happens. But institutions are good at protecting themselves. So I predict that both in Australia and globally, the future of healthcare over that period will be increasingly characterised by fear based responses to digital change, and very different policy choices by different governments while they try to balance between benefits and risks. Eventually, we’ll see what works and governments will start to respond to their voters and do what actually works.
Do you have any tips for patients if they want to improve healthcare data transmission between healthcare providers, related services and their health professionals?
In the big picture there’s a real prospect that the patient’s interests will come second to big institutional interests. Patients are the ones who are invested in their own outcomes, but they need to say something.
So I encourage patients to ask for access to their health records, and to keep and carry a paper summary of their past medical record and what they understand their current treatment plan is, for all their different health issues. This is both good for patients now, and keeps reminding doctors that people do care.
I think that patient’s should experiment with digital tools for collating this information. On the other hand, patients should realise that there’s a long way to go before they can have all their healthcare records on their phone or somewhere of their choice, and that they and the healthcare system can use their own single record to build better ways to provide healthcare. So be… patient… about this. It’s going to take years to work this out.
I’m truly sorry if you don’t have years, and I know many people who don’t, sadly - we’re working as hard as we can at the standards level, but there’s a long way to go and a lot of change to make yet.
Note that here in Australia, the government is pushing the MyHR system but this is only a little useful for this task so far. I worked on the MyHR and still do, and it’s going on the right direction, but we have a long way to go, and the government isn’t investing enough in pushing this along to go further at the moment.
Industry colleagues have often branded you as the private and humble Melbournian "Elon Musk of healthcare". How do you feel about this?
Really? That’s strange. There’s thousands of people working on FHIR and standards more generally - writing the standards, or using them to improve software. I might be more visible than many other participants, but I’m just representing their contributions to our shared public treasure (may I do that well). Is that what Elon Musk does? I think no, it’s not the same thing at all.
But I am happy to admit that I like living in Melbourne, even given the weather.
What do you think of the concept of HealthAide and how it may benefit patients and clinics?
I think that It fits naturally into the paradigm that I described above, collecting your data and then using it to improve your health. Over time, it will become more useful as more of the system opens up to provide services in the right way.
Grahame, it has been a pleasure talking to you today. Thank you for your time and the opportunity to discuss how you are helping healthcare enter the digital age.
Grahame Grieve is HL7's Product Director for "FHIR" - the leading healthcare data exchange standard of the future. Grahame has a background in laboratory medicine, software vendor development, clinical research, open source development and has also conceived, developed and sold interoperability and clinical document solutions and products in the Australian market and around the world. Grahame has worked to develop standards and solutions with several US vendor consortiums, and the national programs of Canada, England, Singapore, and Australia.
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Disclaimer: This text does not serve as medical advice or an endorsement of a particular product but serves as an example of how technology can improve healthcare. If you have any questions, seek advice from your doctor.