S03 EP 05: When Data Tells a Story: FHIR and Patient Empowerment

Hey, Pip, I want to come to you firstly, because if I'm thinking about the topic that we've got today around data telling a story and patient empowerment and all the work that we do within Sparked around standards and interoperability and those hard, tangible things of putting bits together.

you

know, when you put it through the lens of a consumer, the hard kind of definable part becomes a little bit trickier.

And if I, for example, if I was to go out into the lovely streets of Southwest Sydney where I live, and I was to ask somebody on the street at the front of a clinic, what's the most important thing that we should be focusing on in healthcare right now? I am not sure that anyone would say interoperability and standards, but they may say something that kind of ties to all of that.

So, you know, Pip, from your side, Like why does interoperability actually matter from a consumer's perspective?

Interoperability is just a fancy word for the data flowing through the system.

So it's literally life or death for consumers at times.

It just means that if you go to your GP and they do a test, when you go into hospital, the hospital can see the test results.

What's tricky is consumers actually think this information is already being shared a lot of the time and that they don't really realise just how the siloed system has created all these blockages for the data to flow through.

So I think it's an interesting thing.

Anyone who has a chronic disease or a life-limiting diagnosis, they learn very quickly about the importance of interoperability and how it impacts them day to day.

So, I mean, there's the frustrations of endlessly repeating tests that you don't need to repeat because they can't find the results, but all the way up to that I couldn't find the information at the right time and now this patient is dead.

Yeah.

And those are very real situations that still occur today.

And like you say, there's probably a lot of underlying assumptions that this surely can't happen, but here we are.

And Graeme, the resident techie in the conversation, as you kind of alluded to, if I think about the work that's happening in Sparked and how we kind of think about the consumer perspective, how is that kind of all baked in from your point of view?

It's a number of steps.

In order to have the information in the right place at the right time, you need to be able to move it in the right way at the right time, the right authority and approvals and so forth.

In order to do that, you need consensus amongst the administrators of the systems and the systems how that's going to work.

We work on the how that's going to work part.

And one of the things that I really appreciate about Pip and about Jillian is that, you know, they're very consumer focused, but they're here for the journey because I've tried to engage over the years alone.

A lot of consumer advocates who just can't see that multiple steps.

And I say to them, look, it's a slow process.

But once you get your hand on this lever, this lever matters because we're changing the systems.

And a lot of the people downstream from us are frustrated because they're stuck.