Improving Public Health by Modernizing Data Exchange

ROBERT JOHNSON:
This is Public Health Review, I'm Robert Johnson; on this episode “A Better Way to Share Data Across Public Health Agencies”, we examine the North Star Architecture Framework.

RACHELLE BOULTON:
It really provides that ground level work, the framework, a structure that allows us to capture, share, send, manage data across the public health ecosystem.

TABATHA OFFUTT-POWELL:
And the goal is that it's done in a timely and efficient way so we can respond quickly to our public health priority areas, our communities.

JOHNSON:
Welcome to “Public Health Review”, a podcast brought to you by the Association of State and Territorial Health Officials. With each episode, we explore what health departments are doing to tackle the most pressing public health issues facing our states and territories.

Today, good data can help improve the way public health responds to an emergency, the lack of it, or the inability to get information in a timely manner, can have the opposite effect, a lesson learned the hard way during the pandemic. Fortunately, there's a way forward, via the Northstar Architecture Framework, a combination of tools, processes, and strategies that together represent an evolving approach to data.

Two guests are here to talk about it, Tabatha Offutt-Powell is the Vice President of Public Health Data Modernization and Informatics at ASTHO, she's along shortly. But first, we hear from Rachelle Boulton, Informatics Manager for the Division of Population Health at the Utah Health Department.

BOULTON:
So when I think of North Star Architecture, I think of modernized, interoperable, and scalable public health systems, and so I know those are three buzzwords, but essentially, systems that are flexible to respond quickly to changing public health needs. That could be economies of scale of users, that could be collecting different sorts of data, that could be visualizing the data differently, but flexible systems to collect data.

I also think about data timeliness, being able to collect complete data when we need it electronically so that our providers, our data senders aren't burdened and that we can collect and process data in a timely way, simplifying data exchange with CDC. And other public health jurisdictions, and then I think of presenting that data back to all sorts of different audiences that could be the public legislators, our local health departments, epidemiologists, we need to collect the data, we need to store the data and then the data and the information needs to be accessible to the people who need it.

And I think of the North Star Architecture is really that framework that allows all of that to happen. Thank you.

JOHNSON:
And thinking about your background in public health, things have changed quite a bit since you started, haven't they?

BOULTON:

They've changed a lot. One of the things that I like to do is look back at the 2009 swine flu pandemic and how much we've come.

We have so many technologies and tools that we used for COVID that just did not exist then, but we still have so much more to go to really be able to robustly respond to public health issues.

JOHNSON:
Does the North Star Architecture Framework do that, in your view?

BOULTON:
Yes, I think it does. It really provides that ground level work, the framework.

A structure that allows us to capture, share, send, manage data across the public health ecosystem.

JOHNSON:
Would you say that this is groundbreaking in a sense?

BOULTON:
Yes. I mean, we've had a lot of advances in the past. Even before COVID, ELR, Electronic Laboratory Reporting, was fairly mature. I think all states had it.

We, in Utah, more than 95 percent of all of our laboratory results were being processed automatically. So, we definitely had some advancement in a lot of areas, but a lot was lacking. Challenges with data quality, challenges with scalability of systems, and then, of course, challenges with needing data that we couldn't access.

JOHNSON: Currently, how would you describe Utah's approach to using these services?

BOULTON: So, our approach for a while has been to try and leverage tools across different areas. So, to be able to consolidate, eliminate silos, utilize technologies that benefit a lot of different programs that we've started calling those shared services nationally and internally, but services really that are utilized by a number of different groups.

So that is a big thing that we've been focusing on. We've also really tried to take a disease agnostic approach. And what I mean by that is we don't want to develop solutions for a particular condition or disease that then is only useful for that particular condition or disease. We really want to develop tools and technology that is flexible enough for to be able to respond to whatever we need, but has enough structure that we can take advantage of standards and other sorts of ways to structure and organize data.

JOHNSON:
Does the framework help with that?

BOULTON:
It does. Northstar Framework focuses on standards is a huge piece. Being able to exchange data, utilizing health information standards. So it doesn't matter what system it comes out of, the systems can speak to each other. That's a big focus of Northstar Architecture, the other is on cloud technologies.

And so, that really, addresses a lot of the challenges with scalability during the COVID pandemic. That was one of the things that we ran into is our surveillance system just really struggled to manage the change in volume of people accessing the system, and we ultimately had to move it to the cloud to solve that issue.

And so, being able to move things to the cloud to utilize all of that new technology, scalability, improved security, better sharing of resources, more secure systems, being able to connect to the latest tools. Cloud computing has huge benefits for us, and that is a big focus of Northstar.

JOHNSON:
So, what's the benefit to public health to the communities in Utah?

How do they benefit from all of this?

BOULTON:
So, ultimately, we get better data, and what we want to do with that data is we want to be able to make timely, good decisions to improve the health of all Utahns. So, we want to be able to identify trends as they come to monitor populations at risk to set health policy to evaluate our programs, allocate our resources, and all of that requires data. We need data, we need good quality data, and we need timely data to be able to make good decisions when we need to.

JOHNSON:
Oftentimes, politics impacts how data is managed. Who gets it, how much is collected, those sorts of things. How has your agency navigated all of that?

BOULTON:
Yeah, it's definitely been an issue and you know, the overall intent is to balance the benefits of new technology with sufficient privacy and security safeguards to protect the data that we have. That's a very good thing. We have sensitive data. We want to be good stewards of it. And so, it really is a balance between that.

I think sometimes there's a perception that policy is holding back innovation. And I think there are certainly times where that can be a stumbling block and it can be a little bit of a challenge. People do want to innovate. We do want to utilize new technology. We just want to make sure that we have a balanced approach to clear benefits with the technology and appropriate controls for security and privacy to protect that information.

JOHNSON:
You've seen the need on the epidemiology side of things, and now you're servicing those needs from an IT perspective. What are some of your top lessons learned as you reflect on all of those experiences?

BOULTON: So, one of the big things that I've learned more recently is that we need to spend a lot more time With our end users, educating them on the systems and the data and the processes.

We've run into some challenges where investigators or epidemiologists struggle to really trust the data. And that's because they don't understand where it comes from or how it's processed. They lose the context. That's fair. That's a fair argument. And so we really need to focus on having a base level of informatics IT health information standards literacy.

So that's really something that's popped out to me over the last couple of years and we're really trying to improve that over the next 2, 3, 4 years moving forward. So that's one thing. Another is. Standards, having health information standards that allow us to exchange data with anyone, to understand and interpret that data, to be able to automate processes, is really critical for us to collect data, process data, have it available, and to actually have it mean what we think it means.

That's a huge piece. We don't want people to use data and draw conclusions that the data isn't appropriate for.

JOHNSON:
Do you feel it's going well? How would you characterize the transition so far?

BOULTON:
I think we've had a lot of successes. We've come very far. One of the things that I really love about the public health community is that there's collaboration, not competition.

And I love that. I love that I get to take advantage of what other states have done, of their expertise, their knowledge, even just brainstorming with colleagues. But there are a lot of challenges, right? Policy is always an issue, even though we've had additional funds to move forward data modernization, I think a lot of people still struggle to have the resources, both the technology and the people to really continue to accelerate and move things forward.

Another challenge is just, with the workforce is just a skilled workforce. It is hard to find the people who have the knowledge and the skills to do what we're asking them to do. So that can often be challenging. There's a lot of turnover, a lot of vacant positions, and that's certainly been a big challenge for us here in Utah.

But there are a number of tools and technologies that are already available that people are using that have really changed the game. We have really been able to enhance our surveillance system, which has been so critical for the COVID response, for all of the conditions that we manage, and standardized surveillance.

We've built a lot of capacity around analysis, visualization, and reporting. That's been a huge focus nationally as well, is You know, recognizing that people need information. We can collect it, but if we can't analyze it and we can't share that information, it's not valuable.

JOHNSON:
So how are you communicating about this work with the partners that you have there in Utah?

BOULTON:
So we have established a public health data modernization initiative council, and that council has engaged with individuals from laboratories, healthcare organizations, our health information exchange, other public health agencies, especially our local health departments and our tribal public health agencies, our state it, as well as security and privacy officers, and even some private businesses and community organizations, so all of those people are involved and we try to get them to feel invested and heard in that process. It's really easy to develop blinders and see partners as like data sources or tools that we use, but they have their own needs and they want to be part of the solution.

And we really want to engage them and have them feel some ownership in this process, but also be able to leverage their expertise and their unique perspectives.

JOHNSON:
Is it a matter of them wanting to hold on to their data or trying to get something in return? Is it fear, lack of understanding, or just a desire to be on an island?

What are some of the challenges that you're working through on the council?

BOULTON:
I think it's all of the above, especially with external partners who provide data, so laboratories and healthcare organizations. I think a lot of times, and this does happen, it's not just a perception on their side, that they spend a lot of time giving data and they don't really get anything back.

The public health black hole, we suck data in, but then they don't know where it goes, or how we use it, or what decisions. And I think it's really important that we need to have a lot more visibility in how we're using that data, but we also need to make that data more accessible and usable to the people who provided it to us.

Our local health departments and our tribal public health agencies. often struggle to access data that's held in state managed systems. That is a big problem, and so it can be difficult to support some of these technologies and tools when there's a concern that you won't be able to access your own data.
So that's something that we need to address or it will be difficult to get those sorts of partnerships and support.

JOHNSON:
With regard to communication, is there anything that you wish you had access to or that was a part of this?

BOULTON:
I think something that is very challenging is just defining what Northstar Architecture is.

It's big, it's complex, and so we can talk about it, we can talk about a framework, but what is it? And so, for me, sometimes that's difficult to communicate to other people. We have A lot of new people coming into the field, and we're trying to get people who are not in the informatics workforce to be able to understand some of these concepts a little bit more, and so being able to actually communicate what it is, what it means, and how it benefits them is still something that I think we struggle with.

So, that's certainly a challenge. I think another challenge around communication is, Just the complexity and the number of pilots, of task forces, of discovery sprints that are going on. And so, there's a real challenge in being able to keep up on what's happening, what are they finding, what stages are they in, how can I take advantage of work that's already going on, how can I get involved.

So there's some real challenges there as well.

JOHNSON:
Why do we need to go through this exercise, in your view?

BOULTON:
I think sustainability. We talk about the data modernization initiative as really a way to get our systems to where they should be, but once they get to where they should be, we have to keep them that way.
And so, data modernization and informatics, is a continuing thing. So we really need to lay a foundation where when we're no longer talking about Northstar Architecture or data modernization, they're just not the buzzwords, they're not the exciting projects that that groundwork, that framework is still there that we can continue to innovate, enhance our systems, ensure the appropriate security and privacy regulations.

JOHNSON:
Because we can't continue doing business the old way.

BOULTON:
Yeah, exactly. If we can't sustain it, then we just go back to where we were. And we had, what, two or three good years of our surveillance systems, and then they start to crack and they crumble again. And then we have the next emergency and we weren't able to utilize tools that we had because we could not keep them around.

JOHNSON:
Tabatha Offutt-Powell leads data modernization work at ASTHO. She tells us why the North Star framework is so important to public health.

OFFUTT-POWELL:
It matters because I think for many years, we haven't had a North Star. And so we've had initiatives to some degree, but not a really unified initiative that really takes us to a place where we can have shared resources or shared services, where we can leverage.

The work that the federal partners are doing like CDC so that we can work to identify those solutions, those technical solutions that will help us get to the point where we need to be to have high quality data that are following standards that are being transmitted in secure ways to our partners and to us so we can help in public health be able to respond to those greatest priorities within our community.

JOHNSON:
It's really made up of several different components. Can you tell us what some of those are?

OFFUTT-POWELL:
Sure, there are a couple of different components that, when we really think about North Star, what does that really contain? What does the framework actually contain? There's a focus on data sharing tools and technology.

We also want to focus on informatics and workforce capacity. So from those data sharing tools and technology there are a couple of those tools For example, the data ingestion, building blocks or dibs as we refer to it. That really helps us to formalize that way. So really what that is, is an end-to-end solution that increases the usability of our data across different data formats and conditions.

And then there also is a separate one that we've heard about and that we know of as the enterprise data exchange. Dex or D.X. for short. t's a cloud native centralized data ingestion, validation, observation service to support common data types. So in public health, we think about HL seven. We think about fire.

There's CSV files and XML type files that we have access to data. And this is a way to help ingest those data in a standard way because there may or may not be standard formats for data transmission and exchange.

JOHNSON:
We heard throughout the pandemic that, in fact, data comes in all shapes and sizes and that there really wasn't much commonality.
Does this approach attempt to solve some of those issues over time?

OFFUTT-POWELL:
Yes, exactly. That is a really great point. I think it became even more apparent during the COVID 19 pandemic that health departments, public health agencies were having to ingest and find ways to be able to respond to COVID 19, consume and ingest data that did not meet these standard formats.

So other national initiatives like North Star is that one that helps us to realize that there are ways that we can centralize the data, we can use these standards, and that goes hand in hand with things like the Trusted Exchange Framework and Common Agreement, TEFCA, also using FHIR, HL7, where we can transmit data in a very rapid way with those standards being met.

So, yes, this is one of these ways that we can leverage what we've learned during the pandemic to move us forward and modernize our systems and continue to enhance and sustain those systems over time.

JOHNSON:
Is all of this available now?

OFFUTT-POWELL:
Dibs and the DEX or DX. Those two are some that, you know, that are coming up.

There are pilots underway that these are tools that public health agencies can start to engage in. Just as a couple of examples, some of the building blocks as part of DIBs, there's converter services and record leakage services and data viewers and data validators. All of those are there. So those conversations with our CDC colleagues to be able to start to leverage some of those tools.

JOHNSON:
A lot of people listening aren't going to know what DIBs and FHIR and all of these other terms are. So essentially, is it accurate to describe them as formulas or platforms that can essentially make data transferable across agencies and jurisdictions? Is that what all of this does?

OFFUTT-POWELL:
Yeah, that's a really great point because I think a lot of times we use these terms that may not be, you know, recognizable across different areas within public health, and I think the really key, like you said, is it's the tools and the technology that allow us to be able to share data more easily.

And having these more modern tools to do that, so that on the end, we can actually in public health and working with our healthcare partners and with our community members, be able to have data more readily available to be able to identify health inequities and be able to act on analyzing data that can help inform policies, interventions, and programs.

JOHNSON:
What's the adoption rate right now as it relates to those processes that are available, be they pilot or otherwise? Are people starting to try them out?

OFFUTT-POWELL:
Yeah, so there have been a few pilots, and I think that more and more engaging in these discussions with our CDC colleagues and partners, there is that opportunity.

And so, I think that this is in the stages of where That interest and understanding what's within this toolbox, what are the opportunities that are available to public health agencies is really, really key. So public health agencies have been undergoing their data modernization assessments to see what systems do they have in place.

What is their technology stack? What tools do they have? What do they need? And, I think in that next step, is really seeing what are the shared services through whether that be dibs or some of these other areas within the North Star Architecture that could benefit their public health department.

JOHNSON:

If an agency is thinking about getting involved in this, what do they have to do to prepare?

What do they have to be thinking about now and in the near future?

OFFUTT-POWELL:
I think there are lots of different pieces to that, I think, you know, there's the data governance and the ability to, you know, work with their information technology team to conduct those assessments to see what do they have in their inventory, to look at the different types of opportunities that they may have internally, leveraging their informatics workforce and understanding some of the challenges when it comes to, you know, sustainability and funding.

So I think all of that would be part of that assessment and then leveraging resources like at ASTHO, and our national partners, and with CDC to see how they can then leverage those resources that they have available to them through something like the North Star Architecture.

JOHNSON:
So, it sounds like if you're not on board right now, you still have a lot of time to figure this out.

This really is at the beginning of the process, isn't it?

OFFUTT-POWELL:
You know, I think everybody's in a little bit different stage of data modernization. So I think when we work together collaboratively across public health, that's really, truly the power because with that knowledge. Knowing what another agency may be working on.

Oh, I didn't realize that. That's a really great opportunity. Look at these resources. You know, we implemented the converter service or the record linkage service or those different types of services. And in doing that, I think you really start to get into the space of using that to be able to make changes and advances within your own agency.

JOHNSON:
Is money the key challenge to all of this?

OFFUTT-POWELL:
I wouldn't say alone it's funding. I would say it is workforce and capacity and funding. And I think those together, looking at policy and data governance and those areas, it's really a holistic look at that. It is definitely one of those pieces that can, you know, contribute to some of those challenges and also those opportunities when the funding does become available.

So it's definitely a piece of it for sure. And it may be more so in, in certain jurisdictions as compared with others, you know, leveraging state resources, leveraging state funding when it's possible to do that. And then also leveraging some of these shared resources that may have lower costs for maintenance and those.

So I think it's definitely one of the factors.

JOHNSON:
I think when most of us hear a term like Northstar Architecture Framework, we think of something really big. But you don't have to be overwhelmed by this, right? You don't have to do it all at once.

OFFUTT-POWELL:
No, not at all. I think that needs to be manageable. And I think that's really the key too, is that, you know, there's only so much that you can do at one time.

And so a lot of times that comes to prioritizing. So looking at your ecosystem within a public health agency really helps to say, there are all these different things that we want to do. Now we have our inventory of systems. Now we have these different shared services that may be available to us. And I think that's part of that process of identifying how do we, you know, prioritize which one of these is going to really help us to stay strategically ahead and move forward as things may change.

And I think that's definitely part of it is that you don't have to do all of it all at once. It's really leveraging The capacity, the workforce, the policy structure that you all have, and then being able to say, what is the next step? And it varies from agency to agency.

JOHNSON:
What do you like most about this opportunity?

OFFUTT-POWELL:
I'm really passionate about informatics, you know, and data modernization. And the reason is for that, And the idea of this North Star Architecture, really providing services to public health agencies in a way that can help them move forward. And sometimes it can be overwhelming, and sometimes you just don't know which service to pick.

And I think that's why we're here. Really, what I think about is that in the end, with this infrastructure in place, with modern systems that are agile, that are response ready, We will have data on the other side with our epidemiologists and our public health program staff and our, our leadership with state health officials and, you know, up higher than that, where we can say, these are the conditions and diseases and the health of our communities.
How can we then improve that? work with our partners, work with our communities to really have a healthy, healthy community that is really benefiting from all the services that are available, depending on where you are.

So it really, to me, is about all of that holistically.

JOHNSON:
Thank you for listening to Public Health Review. If you like the podcast, please share this episode with your colleagues on social media. And if you have comments or questions, we'd like to hear from you. Email us at pr at ASTHO. org. That email address again, pr at ASTHO. org. You can also follow us using the follow button on your favorite podcast player.

And a reminder that you can stay up to date on everything happening at ASTHO by tuning in every morning for Public Health Review Morning Edition. We cover news like this every day. Look for the link in the show notes and let us know what you think. This podcast is a production of the Association of State and Territorial Health Officials.

For Public Health Review, I'm Robert Johnson. Be well.