The future of data in in collaboration among standards bodies (Rachel Dunscombe)

[00:00:00] Dear listeners, welcome to Faces of Digital Health, a podcast about digital health and how healthcare systems around the world adopt technology with me, Tjasa Zajc.

[00:00:12] Healthcare data standards are an ungrateful topic to discuss, at least for me.

[00:00:20] Those working in healthcare IT will get a headache or roll their eyes if you just mention interoperability or integration.

[00:00:29] A lot of hope was present in the healthcare industry when the fire was introduced and by many it was seen as a silver bullet to healthcare data interoperability problems.

[00:00:43] There are many different problems in healthcare for different purposes.

[00:00:51] For example, DICOM for medical imaging, OMOP for clinical trials and observations, FIRE for the exchange of data and also its predecessor HL7.

[00:01:05] There's SNOMED, which standardizes clinical terms for diseases, symptoms and procedures.

[00:01:12] And then there's also Open EHR, an open standard framework for creating, managing and exchanging electronic healthcare records on a very granular clinical level.

[00:01:25] At the first annual conference of Open Air International Foundation, I had a very brief chat with Rachel Dunskomp, the CEO of Open Air International,

[00:01:37] about how far we've come with data standards in the last 30 years and what we've learned from an initiative called Good European Healthcare Data,

[00:01:49] which was basically an initiative 30 years ago to create a European healthcare record.

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[00:02:05] You can find it at fodh.substack.com.

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[00:02:12] The September 2024 edition talked about why countries struggle with healthcare digitalization and digital transformation.

[00:02:22] In the past, we covered should we give up on digital therapeutics, different aspects of country healthcare digitalizations and trends such as AI.

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[00:02:43] Now let's dive in.

[00:03:00] Rachel, can I stop you for a second?

[00:03:03] Yeah, of course you can.

[00:03:04] Okay, awesome.

[00:03:06] I learned one very interesting thing among other things.

[00:03:11] Go on, tell me.

[00:03:11] Yesterday.

[00:03:12] So I didn't know that 30 years ago there was already this initiative about the good European healthcare record,

[00:03:21] which kind of sounds very similar to me to the joint European patient records that we're trying to work on now.

[00:03:27] Yeah.

[00:03:28] Why is history repeating itself?

[00:03:31] What's different today than it was then?

[00:03:33] Oh, so we're very different today.

[00:03:35] So 30 years ago, data was really for humans to read in letters or on a screen.

[00:03:39] But today we're in the age of kind of cognitive intelligence, AI and things like that.

[00:03:44] And so now we really understand the importance of data.

[00:03:47] And now we're in a position to do things like home-based pathways, remote pathways, patients doing self-care.

[00:03:52] Back in those days, we weren't ready for that.

[00:03:55] And so data wasn't so important.

[00:03:57] So it is really top of people's agenda now.

[00:04:00] Whereas back then, it didn't matter quite as much.

[00:04:03] All the hospital care was just done in the hospital, really.

[00:04:06] Do you think we've learned anything from that project?

[00:04:08] Because when we talk about the European health in the space, there's a lot of projects that kind of have led to this moment.

[00:04:14] So it's not like we're building everything from scratch since 2024.

[00:04:19] Yeah, I think we've learned a lot in the last 30 years.

[00:04:22] And there's a lot of lessons learned from doing things certain ways or what has or hasn't worked.

[00:04:27] And I feel that we have to learn as we go.

[00:04:30] So the last 30 years have been valuable.

[00:04:31] But actually, now that we're moving into this cognitive space, that's really important because it's actually pushing the agenda of data.

[00:04:39] The discussion here is obviously centered around data and data standards.

[00:04:44] And I think that in the last maybe two, three years, there's been less of this kind of battling debate around whether or not fire is better than open air.

[00:04:56] There's a lot more collaboration.

[00:04:57] So how do you see the discussions around data?

[00:05:01] And what are you missing in these discussions?

[00:05:03] So I think between the standards bodies, all of them, we have what we need.

[00:05:07] We just have to work out who does what.

[00:05:09] So for me, safe fire and open air, I've always run the two of them, right?

[00:05:12] They've always coexisted for me.

[00:05:14] And I think there was duplication.

[00:05:16] There was overlap to a degree in the past.

[00:05:18] But we're both deciding we're not going to do those overlap things.

[00:05:21] We're going to complement one another.

[00:05:22] The much bigger prize is getting health care right and saving lives and improving lives.

[00:05:27] And I think everyone is behind that now.

[00:05:29] I think the standards bodies have matured as well.

[00:05:32] And they understand what they're about.

[00:05:33] And they understand what their identity is.

[00:05:34] So for me, it really feels like a very opportune environment where everyone is working towards the same goals.

[00:05:40] Everyone's having really constructive discussions.

[00:05:42] So again, when standards bodies start, they have to find out who they are, what they're doing, what they're about.

[00:05:48] And now they know.

[00:05:49] And now they're ready to complement one another and work out what they do and what they don't do.

[00:05:53] So what do you think is the next step that needs to happen to drive progress forward?

[00:05:59] One thought that stood out most to me was when we talk about open standards and working together,

[00:06:06] this can't be possible if communities are siloed, similarly as data is siloed.

[00:06:12] Absolutely.

[00:06:13] Communities need to have a governance that will allow everybody to have a say.

[00:06:17] And that discourse of debate to happen and the right thing to come out from decision making.

[00:06:22] For me, we need those communities of practice.

[00:06:25] We need standards bodies to actually allow this to really be democratized.

[00:06:29] And the members to be able to decide what is going to move forward and what's important.

[00:06:34] And I think we're pretty good at that clinically with Open Air.

[00:06:37] That's one of our strengths.

[00:06:37] But I think we're all going to have to work together.

[00:06:41] My ideal outcome from this as a former CIO is like really practical how-to guides for on the ground.

[00:06:48] Yeah.

[00:06:48] A number of standards bodies, and you heard yesterday from SnowMed that were planning joint implementation guidance.

[00:06:53] We should be aiming for that from HL7.

[00:06:56] It's to say, OK, health system, this is how you can use the standards together to get the best outcome for your population.

[00:07:02] So I'm really delighted we're talking in those terms.

[00:07:04] OK. Who do you think can create those guidelines and kind of those that override showing governance?

[00:07:11] Does there need to be another organization that's going to connect them?

[00:07:15] No, not at all.

[00:07:16] So yesterday we heard from Don and I, and our teams have been talking about implementation guidance that we jointly publish,

[00:07:23] which is what it should be.

[00:07:25] It's the standards body saying this is how you can use these standards together to best effect.

[00:07:29] OK. I will definitely chase you on when those are ready.

[00:07:33] Hold me to account on this. That's good. I like it.

[00:07:37] You often get invited to talk about AI as well.

[00:07:40] Yeah.

[00:07:40] And good data is the prerequisite of good AI.

[00:07:44] Yeah.

[00:07:45] It's, as you like to say, AI is what it eats.

[00:07:48] It is what it eats. If it eats bad food, right, even the best AI is not going to perform.

[00:07:52] So one of the reasons I came to OpenEAR was having tried to implement AI and found, you know, the huge issues with data.

[00:07:59] So for me, I'm doing this because it's the foundation to the next generation of healthcare solutions.

[00:08:05] You were recently also in the United Nations talking about AI.

[00:08:10] Where, what do you see as the importance of discussions on that level?

[00:08:16] To which extent are these discussions too far from what's happening on the ground?

[00:08:20] So we need discussions at all levels.

[00:08:22] But unless we have international standards around some of these things, so I'll give you a simple example.

[00:08:27] The European food label for what's happening in an algorithm.

[00:08:30] That's something that we've talked about at CENT 251.

[00:08:33] And those things we need at either, say, European level or an international level.

[00:08:38] So talking at the UN about the common things we need globally, which are around standards, that's really important.

[00:08:44] Because the standard space is yet to fully develop.

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