Episode 50: Rachel Dunscombe on the Future of HL7

In Episode 50 of the Informonster Podcast, Charlie Harp sits down with Rachel Dunscombe, CEO of HL7 International, to talk about her journey through healthcare, digital transformation, and standards development.

Rachel shares the experiences that shaped her perspective on interoperability from leading digital initiatives within the NHS to now working at the center of standards development as CEO of HL7 International. Charlie and Rachel discuss the role HL7 plays in supporting modern healthcare infrastructure, enabling new models of care, and helping clinical data move more effectively across systems.

They also explore the growing intersection of AI and healthcare data, why strong standards and terminology still matter, and what the future may hold for the global healthcare standards community.

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Transcript

Charlie Harp 00:02.39

Hi, I'm Charlie Harp and this is the Informonster Podcast. Today on the Informonster Podcast, I have Rachel Dunscombe from Health Level Seven (HL7) here to talk to us about her trajectory through healthcare and what she sees as the future of HL7. Welcome, Rachel. 

Rachel Dunscombe 00:22.07

Thank you so much for having me on, Charlie. 

Charlie Harp 00:25.14

Well, one of the things we do on the Informonster Podcast when I have somebody on is I ask them to kind of give a little of their origin story for the listeners who may not be familiar with them. You mind doing that? 

Rachel Dunscombe 00:38.10

Yeah, absolutely. I've had a lot of hats in the past. I've been a CIO. I've been a CEO in healthcare. I've led academic programs and have been a professor and I've led not-for-profit standards bodies. 

Rachel Dunscombe 00:51.45

So I've been around sort of the global scene of standards for a number of years, but actually leading global standards bodies for about three years. And I'm absolutely delighted to be here at HL7 International. 

Charlie Harp 01:05.27

So let's click into that a little bit. 

Rachel Dunscombe 01:07.22

Yeah. 

Charlie Harp 01:07.96

You know what? I hate when people say, let's double click on that. People say, know how I got it let into my brain. Let me change that and just say, can you go a little bit more into your history? 

Charlie Harp 01:18.82

Talk about kind of the places you've been and the stuff that you've seen. 

Rachel Dunscombe 01:23.03

So I'll tell you my personal story. I was CIO at what was the most digitally mature organization in the and NHS. And I was working on something called data saves lives and data saves lives was using HL7 standards and other standards to pull together data to improve lives and save lives and actually quantify that. 

Rachel Dunscombe 01:43.99

And There was one hugely impactful day when I came in and we were doing work on stroke and we'd created sort of real time data that was between care settings and that was saving one life in 10 over a hundred days. And improving outcomes for everybody else.

Rachel Dunscombe 02:00.57

And it was at that point, I kind of realized the answer is in the interoperability in the data. Yeah. We were also, you know, when I was working in healthcare systems, it was one of the first integrated care systems or ACOs, as you'd know them. And we were putting together you know quite novel ways back in sort of 2017 of running home-based pathways with devices and apps and wearables. And I could just see that unless we got the standards in place and unless we got the data you know presented right place, right time, we could either miss this opportunity or we could really leverage it for new models of care. And I just became endlessly interested in all of the aspects of the interoperability. It was it's just it just really captured me. It's like when you stand in a different perspective and suddenly see the world differently, I could see what this could offer for the next generation of healthcare that needs to be more cost effective, safer, more convenient for the citizen, right? 

Rachel Dunscombe 03:01.50

Yeah, so that was kind of my epiphany moment that also I did do policy roles and academic roles publishing on this all of these sort of you know alongside my NHS role but I think that day probably when I went in and looked at the stroke data was the day that I shifted. 

Charlie Harp 03:24.21

It's kind of exciting. When I worked in, I started out in healthcare a long time ago and I also kind of started in the trenches in the clinical lab setting. 

Rachel Dunscombe 03:33.75

Yeah

Charlie Harp 03:35.90

And it's, I think when you start in the trenches, you have a certain appreciation for the impact that you can have on people. It's like, well, I’m not a doctor. I can't, I can't save somebody's life in an in a operating theater. 

Charlie Harp 03:54.42

But the work that I do and the work that we do informatics has a really significant impact on a lot of people.

Charlie Harp 04:02.03

We can help a lot of people through what we do. And of course, you know, the ability to exchange information and enrich what's happening or enrich the knowledge of the provider and the other folks around the patient is a huge benefit that standards bring that people, you know, don't always get like some of us that kind of started in the trenches and you see kind of the Wild West and you see how the standards and some of the things we're doing can kind of bring order to that chaos and make it usable data. 

Charlie Harp 04:33.77

I think that's powerful. And I think that's why we get very passionate and kind of addicted to what else can we do?

 Rachel Dunscombe 04:39.58

Absolutely. 

Charlie Harp 04:41.11

You know, we can do this. What else can we do? 

Rachel Dunscombe 04:43.51

Yeah, how can we make this better? Yeah. You kind of have to have that ability to picture where we could go in your mind. And that took me time to build. And it took all of that experience in health systems to inform that. But when you can actually see what we can do with interoperability terminology and how we can bridge lot of the gaps, you know, I love the work of Peter Pronovost in the US, 1.3 trillion of defects in value, many of which we can address by getting the right data and the right terminology in the right place at the right time. 

Charlie Harp 05:17.84

Yeah, and it's one of those things where we work with a number of organizations, and we also deal with a lot of interoperability and data quality deniers. 

Charlie Harp 05:30.20

And what's interesting is, well, because it's hard for people in the trenches sometimes to understand why I have to do this extra work and what's the benefit of that. But what I've found is when people start to see the benefit of that, they do kind of get into that, okay, what else can we do? 

Charlie Harp 05:46.96

What's next? 

Rachel Dunscombe 05:46.94

Absolutely. Absolutely. 

Charlie Harp 05:47.99

So in all the different hats, tell me about the CEO hat. 

Rachel Dunscombe 05:52.91

The CEO at HL7. Yeah. 

Charlie Harp 05:55.64

Okay. so that's where you are today.

Rachel Dunscombe 05:57.43

That's where I am today. So I've been CEO of the NHS Digital Academy. I used to lead all the digital health education for the NHS. I've been CEO at Open Air International. But HL7 was the biggest infrastructure sort of benefit that I had from interoperability as a CIO and just, you know, 

Rachel Dunscombe 06:18.42

when the opportunity came to actually lead HL7, having seen how much benefit had given me, I just wanted to go for that. So it's been a huge opportunity and it's a global community as well. It's based obviously, you know, from the US, but I think it's beautiful to see a global standard emerging, things like the International Patient Summary and all the other initiatives we're working on, will allow people to travel and data to be collated around the globe for research. So for me, but both that kind of, you know, scale, but also the size of the opportunity. And I think, you know, it's probably worth us touching on some of the size and scale of the opportunity. 

Rachel Dunscombe 07:02.01

So if we look at the economics of this, The OECD is doing some really fantastic work and they have been quantifying financially the benefits of interoperability. They're going to be publishing that later this year. And that really is looking at somewhere in the region of 5% for every healthcare system, the actual financial benefit of interoperability as a minimum. And that's before you start putting AI on top. 

Charlie Harp 07:30.75

So when you think about kind of your trajectory getting into this role with HL7, I mean, it's a little bit different. 

Charlie Harp 07:44.06

How do you see your background impacting the future of HL7 and where HL7 could go?

Rachel Dunscombe 07:51.26

So I think for me, there are two things that HL7 need to enable. There is one piece, which is around the new models of care and the new ways of delivering care. And if we look at, you know, things like the Caliper Accelerator, which we've just started up, we're embracing all of the new types of data, really putting HL7 as a foundation, the new infrastructure for healthcare, care if you like, it is one thing. The second thing is to safely embrace the AI agenda. So to provide the right data for AI to use and to be trained upon, as well as participating in the future in you know the wider standards around AI. So I think they are the two big things that are coming up in the next three, five years for HL7. I have had a few people say to me, what standard is next? I don't think it's a question of what standard is next. I think it's a question of what we enable with the great standards that we have and how we collaborate as well with other standards bodies. So for me, it's really going from what I would say has been in a legislative push to do this to being a, a pull because people can see the benefits and are really delivering the benefits at scale with it. 

Charlie Harp 09:06.04

I think you're right. I think when you think about the what's happening in the US right now and all the impetus around implementing FHIR and making FHIR more performant, making it more usable, I think even the stuff that's coming out on HTI 5 where it's really, you're almost like they're saying, we don't care so much about your EMR and how it works. What we care about is how you're able to share data with FHIR. 

Rachel Dunscombe 09:32.02

Absolutely. Yeah. I mean, HTI5 has been fascinating to read through and comment on. And for me, it's really about describing the outcome as opposed to how you do it, which I think is probably the way forward. 

Charlie Harp 09:44.87

Now, one of the things you said a minute ago is you said that, you know, HL7 and AI, but everybody knows that AI is going to make terminologies in HL7 optimally. 

Rachel Dunscombe 09:54.62

Oh, no, it's not. So for my sins, I used to be the lead AI advisor on the AI Council for the UK government in healthcare, so I have a lot of friends in this space and I'm also part of a kind of action learning set ongoing in AI. 

Rachel Dunscombe 10:14.84

That is not true at all. And you know none of the professionals I know that work in AI believe that that is going to happen. You need fixed points and you need you know variables. So the fixed points, AI needs to learn how our health systems work, what interoperability, what terminology, it uses and what language it speaks. Now, it may help us to improve our interoperability or terminology in the future by suggesting things, but it is not going to invent its own system that is going to work you know better on our system as it is today. And certainly for me, you know this idea that it doesn't need to have any fixed points to learn, it is a complete and utter fallacy. 

Charlie Harp 11:00.73

Yeah, I agree. in fact, I did a previous podcast where I interviewed ChatGPT and even it agreed. 

Rachel Dunscombe 11:06.55

Did it. That's good. I'm glad it agrees. I'll chat with Gemini later, right? 

Charlie Harp 11:11.42

I think that the terminologies, the ontologies and the standards we have. 

Rachel Dunscombe 11:14.87

Yes. 

Charlie Harp 11:16.57

It creates a scaffolding that that puts some kind of certainty around the information as opposed to you know the word salad and the unstructured data that flies all all around healthcare. 

Rachel Dunscombe 11:18.65

It does. 

Rachel Dunscombe 11:31.54

And another thing for me, you know, a lot of people said, well, AI will just go freeform and take everybody's voice in input. But unless it knows the minimum safe data sets and other things, you know, there's lots of reasons why we need that fixed point. And that's true of any AI. It needs that. The variables are then, you know, things that it will process against that, like voice input. But we're not going to get to a position where, you know, it's going to start defining the standards for us. So we'll reinvent the standards. 

Charlie Harp 12:02.68

I see AI in healthcare as a tool, just like anything else. It's an accelerator because it can process through a lot of data. 

Rachel Dunscombe 12:07.69

Yeah. 

Charlie Harp 12:10.90

I think our interaction with AI in healthcare is an iterative thing where we produce data, we present it to AI to help us understand and sift through what's going on with the data. 

Charlie Harp 12:23.99

And then we instantiate that into fixed data for the next round. And that that would be a continuous cycle. 

Rachel Dunscombe 12:31.98

Yeah. 

Charlie Harp 12:32.89

I kind of feel like in the future, the way we represent structured data might change. We might do something that's more high resolution, but I do think that we're always going to need some definitive representation of what's going on in the patient. 

Rachel Dunscombe 12:51.48

Absolutely. The best use cases that I have seen and experienced, I've just been using a chat bot from an Austin, Texas based entity, healthcare entity, is the personalization and the experience around the knowledge, right? There's so much that, you know, where our standards and our knowledge bases can be complemented by say, generative AI, to create the right user experience for you know our customers and our consumers. But at the end of the day, I don't think that we're going to be out of a job anytime soon. 

Charlie Harp 13:28.22

One of the things that that you've said before is that standards are part of healthcare's unseen structure. Can you elaborate on that? 

Rachel Dunscombe 13:38.18

Yeah, I'd actually say infostructure as opposed to infrastructure, right? So, yeah, I went on a bit of a rabbit hole while doing some kind of analysis of healthcare systems a few years ago. 

Rachel Dunscombe 13:55.06

And I found out actually that, you know, certain countries and certain geographies allow you to capitalize digital and data, particularly, you know, around data assets, interoperability and so on, because they have return on investment over several years and they deliver really the equivalent of hospital walls, new ways of delivering care in the home or near the home, right? 

Charlie Harp 14:18.57

Yeah. 

Rachel Dunscombe 14:18.68

And so for the future, this is the hidden infrastructure. This will deliver care in the way that we've used buildings to deliver care in the past. We've used a building to you know put somebody in a bed and do their ops or whatever. Well, the equivalent can be done in the home, but the most important piece about that is the data and the you know the IT infrastructure around it. 

Rachel Dunscombe 14:39.29

And so what we're doing is really building the infrastructure for the future. The issue is that if you go into any boardroom or policymaker, they can't necessarily picture that in their head. You can picture a nice, shiny hospital, right? 

Rachel Dunscombe 14:52.21

That's capital infrastructure. 

Rachel Dunscombe 14:53.69

That's worth weight making that investment on, you know. But when you talk about what we're doing, you have to paint those pictures in their heads. You know, you have to make metaphors work or whatever else. And so for me, this is the infrastructure. And coming back to those benefits I was talking about earlier, you know, this is going to be something that is worth the investment because the return on investment will be huge. If we can evolve our healthcare system into, you know, developing new models of care that are more cost-effective and safe. 

Charlie Harp 15:26.96

And if we have more information that we can leverage with technology, because my big thing with healthcare IT is what we're really supposed to be doing is helping, right? 

Rachel Dunscombe 15:37.13

Yes. 

Charlie Harp 15:37.62

And with the you know reduction of the number of providers with the aging population and with more comorbidities, you know if rely being able to rely on the healthcare systems we have could be tremendously powerful and reduce physician burden, improve outcomes. 

Charlie Harp 15:56.41

And in the states where you might get paid by your because based on your outcomes, that could be that could be really important. 

Rachel Dunscombe 16:02.81

Yeah. And the ACOs as well, which are sort of, you know, an agenda in the US you really need to know your populations deeply. We need that data. 

Charlie Harp 16:12.79

So I don't know if you know that Clinical Architecture has a small office in Exeter in the UK. 

Rachel Dunscombe 16:18.01

No, I didn't. 

Charlie Harp 16:18.90

Yeah. 

16:19.25

Rachel Dunscombe

What beautiful place. Yeah. 

Charlie Harp 16:20.86

Yeah, we've been working, I mean, back in my First Data Bank days, we had the office, the multi-lex office in the UK. And actually our CTO lives in Campton, near Exeter. 

Rachel Dunscombe 16:30.97

Okay. Wow. 

Charlie Harp 16:32.73

One of the things that I think might be interesting if you're willing to talk about it with the listeners is just some of the differences between how healthcare, you know, how healthcare infrastructure and technology works in the NHS and versus the US like, for example, I hear people all the time that say, oh, well, healthcare must have in in the NHS or must be total interoperability because the initiatives around SNOMED and DM but I'm curious your perspective on that. 

Rachel Dunscombe 17:00.34

Well, obviously we're very different systems. So, you know, the US is payer provider insurance based and the UK is probably one of the most social health care systems in the UK in terms of the fact that, you know, it's provided by the government. Yes you would think that we are totally interoperable in the UK we even had an NHS number in a single patient id nearly 20 years ago which was brilliant but we have still not made that full interoperability leap we still have data siloed within organizations or regions and that I think has been for a number of reasons partly because of the way we've structured the system everyone thinks it's one a NHS but actually we've got around about 250 organizations each with their own board and autonomy and so every system has its challenges. And every system has its opportunities for me so like I came over and I was the first international CH CIO so I came over and studied the US kind of curriculum because i really wanted to understand the US system going back about eight years ago and I can see the benefits of both types of system I think I can also see the disbenefits of you know both types of the system as well for me though the answer for the future is the same we need this as infrastructure whatever type of healthcare system we have in place. 

Charlie Harp 18:24.18

Yeah. And I think one of the things I tell people all the time, because it's kind of like the AI thing. I have people say, well, Charlie, if we just made everything SNOMED and we did this and we did this and we did this, we'd be sorted. 

Charlie Harp 18:36.02

What I kind of push back on with that is my experience. I've been doing this for like 37 years. Healthcare care is local. No matter what we do, we cannot create a hard structured homogeneous approach to dealing with healthcare, care because the truth is each facility is dealing with things that they have to deal with there's a sense of urgency, they need flexibility. And so the key isn't to try to force structure across the entire system, the key is to create a system that is resilient and interoperable. 

Rachel Dunscombe 19:11.22

Yeah, absolutely. And there needs to be local buy-in. There needs to be local autonomy because populations are very different. Geographies are very different. Needs are very different. Yeah. And as a result of that, you have to tailor how you deliver health care in a different geography. And we need, you know, also to be able to make sure that we've got all of the skills that we need within our health care workforces to actually do this. And one thing for me that I've seen certainly across the UK is that's not been evenly distributed. And I think for the future, we need to make sure that this is profession that people know they can go into. Coming back to it's a job worth doing. We know about doctors. We tell our kids, hey, go be a doctor. But do we say work in terminology or work in interoperability? That for me is a really interesting one. Because people that work locally have the skills and understand the populations will solve the problems in the right way using the standards. 

Charlie Harp 20:10.14

Absolutely. And it's fascinating when you see people that, you know, they started as developers, they started as clinicians, and they end up in health informatics, they end up in standards. And what's amazing about the HL7 community, because I've been kind of peripherally involved in HL7 over the years as a consumer. 

Charlie Harp 20:31.61

And I have friends like Carol Macumber, who are very involved in HL7, and I support you know, her involvement in HL7 directly, because I believe it's really important. 

Charlie Harp 20:44.98

The work that I've been doing lately with the PIQI Framework and the PIQI Alliance has been my first real on the ground working experience with HL7. And I have to say, you know, working through consensus can be a little bit challenging at times. 

Charlie Harp 21:03.90

But at the same time, the willingness, the passion, the intelligence of the people involved, the whole community, it's just wonderful. The people, you know, you could get in an argument with somebody over what word to use and what sentence and what you're doing. 

Charlie Harp 21:22.14

But at the end of the day, you know, they're trying to help you. They're trying to take their experience and help make what you're doing better. And the net product of that is something better. 

Charlie Harp 21:34.01

And I just really appreciate, because you know also a lot of these people that are involved, they're not getting paid. 

Rachel Dunscombe 21:40.41

They're volunteers and they are our hidden heroes and they get unseen quite often. You see a badge, but you don't see all of the hundreds or thousands of people behind that badge. 

Rachel Dunscombe 21:51.70

And that's the incredible thing for me about HL7. It's 40 years next year HL7 has been you know, in operation and the sort of baton passing of generation to generation of developing these standards, the goodwill, the a sort of moral compass of these people to do the right thing for healthcare. It's just incredible. That's part of really the privilege of doing this job is to lead the organization, but to also acknowledge everything that has been done by thousands of people. 

Charlie Harp 22:31.13

So when you think about the future HL7, what gets you excited about where you're headed with HL7? 

Rachel Dunscombe 22:39.79

I think what gets me really excited about the future with HL7 is where we are. We're kind of, for me, especially with AI, at a point of almost an industrial revolution, yeah, where the game changes for all industries and it especially for healthcare. And we have the ability to be that infrastructure, to be the fuel for AI, that is safe, that has got the guardrails around it, that provides the assurance that people need to actually do this safely. 

Rachel Dunscombe 23:10.62

And we also have the ability to be that infrastructure that powers the future healthcare system and how that's delivered. And so for me, I think standards are really rising in the sort of importance and their relevance to the healthcare system. And I think they're really going to show their value. So for me, it's so exciting to work collaboratively to deliver that, both of the HL7 and other the standards bodies you know around us, but also to bring on the next generation of people, as I said, who are going to do this work. you it's going to be a growth profession, I think. And you know being able to provide education, opportunities, and an environment where people can thrive, I think it's solving healthcare's problems with modern infrastructure in a modern way. 

Charlie Harp 24:02.84

Excellent. Is there anything else you'd like to share with the listeners? 

Rachel Dunscombe 24:08.18

No, not really. I think, you know, if you want to get in touch, I am absolutely happy. I'm on, you know, sort of LinkedIn. Give me a sort of wave or whatever else if you want to talk. But I just encourage everyone to get involved with HL7 and other standards, because for me, this is something that's really worth doing. 

Charlie Harp 24:30.75

Will you be in Rotterdam? 

Rachel Dunscombe 24:32.08

I'll be in Rotterdam on the ship. Absolutely. Are you going to be with us as well? 

Charlie Harp 24:37.18

I would love to be there. I just don't know if I can make it. But I wanted to be in Madrid too, but I was able to go to Pittsburgh. 

Rachel Dunscombe 24:40.35

Oh, we'll send you a postcard if you're not.

Rachel Dunscombe 24:48.18

Yeah, not too far for you. That's good. 

Charlie Harp 24:51.29

Not quite as fancy as Rotterdam, but you know, Pittsburgh has its charm. 

Rachel Dunscombe 24:54.03

Absolutely. Well, we look forward to seeing you at a future working group meeting and we can meet in real life. 

Charlie Harp 25:01.09

That would be delightful. Rachel, thank you so much for your time today. And I'm very excited to see where you take HL7 in the future. 

Rachel Dunscombe 25:04.61

Thanks, Charlie. 

Rachel Dunscombe 25:11.27

Great. Thank you. 

Charlie Harp 25:12.57

Thank you.