One of the most exciting parts of hosting Inform Me, Informatics is meeting really interesting people and learning about their really interesting work. I first met Beck Willis years ago when we passed each other in the hallways of The Task Force for Global Health, but I didn’t know much about her work until I read a blog she wrote for the International Trachoma Initiative (ITI). Reading Beck’s blog made me realize there was a really interesting informatics project happening right upstairs!

In this episode, I speak with Beck about ITI and the work it’s doing with partners to treat and eliminate trachoma worldwide. We also talk about how the introduction of new technologies like the Tropical Data app have changed the way ITI does its work. Check out Beck’s blog “Ending a Plague with Smartphones” to learn more!

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Beck Willis (right) and I in the Task Force for Global Health lobby

INTRO

JESSICA

Hi, I’m Jessica Hill. Welcome to another episode of “Inform Me, Informatics.” In the past, we’ve talked about ways new technologies change the work of public health informatics and as a result, change the way public health does its work. Today’s episode highlights one of these stories and it’s a global health initiative that has developed new and more efficient ways to collect and analyze data.

The International Trachoma Initiative or ITI is a program that works with partners in over 50 countries and the World Health Organization in a global effort to eliminate trachoma by 2020. Trachoma itself is a preventable eye disease that, if untreated, can lead to blindness. In fact, it is the leading cause of preventable blindness in the world. Coordinated global efforts to treat and prevent trachoma have been underway for decades. These efforts have relied on data from household surveys to track new infections and to determine where to send medications for treatment. And here is where informatics steps in. Recently, I spoke with Beck Willis, ITI’s data and analytics team manager about how informatics is changing trachoma prevention and treatment efforts.

BECK

The International Trachoma Initiative were tasked with managing the humanitarian donation by Pfizer of Zithromax, which is an antibiotic, for the elimination of trachoma. So my team, the data and analytics team, we’re really focused on how do we use treatment data, and survey data, and other types of data to make the program stronger, more efficient, things like that. So that’s kind of our role in the program. And there are actually… There’s a leadership team, of course, with the director and deputy director, but there’s also a supply chain team as well as a program team. So we all work very closely together to make sure that the right amount of drug gets to the right place in a speedy fashion. While ITI focuses mainly on the antibiotic side of things, there’s actually a whole strategy called the SAFE strategy. And that stands for Surgery, Antibiotics, Facial cleanliness, and Environmental improvement. So those are the four main interventions that can be used to eliminate trachoma.

JESSICA

ITI and its partners work to understand where trachoma infections are happening all across the globe. They then use this information to allocate treatment resources, like the medication Zithromax, and to implement other arms of the SAFE strategy. This work has been happening for decades. Health workers travel to impacted areas, which are often very remote, and conduct household surveys to assess the prevalence of active trachoma infections as well as the number of cases of the advanced stage of the disease. Previously, these health workers would submit this information via paper surveys, first, to the ministry of health as well as to global partners who are tracking the disease across countries. But over the past few years, there’s been a shift to electronic data capture. Just last year, a new application called Tropical Data was introduced, which has really increased the timeliness and completeness of the data that health workers collect. As you’ll hear, health workers now carry smartphones with the Tropical Data app and can share their data in real-time.

BECK

So Tropical Data was launched in February 2016. Since then, we’ve done work in 25 countries. We’ve completed surveys in 236 districts. We’ve examined 650,000 people and collected and processed 19 million data items.

JESSICA

Nineteen million data items in just a little over a year.

BECK

Mm-hmm.

JESSICA

That’s incredible.

BECK

This app, it pretty much just provides a framework for connecting the phone to a cloud-based database, and that’s where the survey form data are transmitted with a push of a button. So, you know, the app is not really complex but that’s by design because we need it to be flexible enough to handle multiple survey types. We need to know that it’s just going to work and that we don’t have to, like, make sure some fancy feature is going to break if the phone is updated or something like that. So, it’s intentionally very simple framework.

So in terms of where the data go after being sent by the phones, they’re stored in a cloud-based database, which means that national programs can access their data in real-time by connecting via our web-based user interface. So actually just recently, we worked with a country to set up a project-specific API, which is essentially a channel connecting the cloud database directly to their in-house database. So they can pull in their data at the exact time that data are transmitted to the cloud-based database.

You know, and just to touch on that a little bit more, country ownership of data is one of those aspects of the project that we take the most seriously. It might be the most serious aspect along with, you know, quality of data and quality methods. So we never claim ownership of countries data, and we never make changes to their data without their permission or their request. So it’s really important to us that the countries can access their data whenever they want, you know, midnight or… It doesn’t matter. We should not be the ones providing the data to the countries. So we very much designed this system with that in mind.

So after the data are transmitted to the database, here in ITI, my awesome team, we provide regular update summaries to the national programs, you know, showing various levels of aggregation, and we have some flagging systems incorporated into it. So if you think about that, it’s just really awesome because we’ll have teams in the field, they push a button at the end of the day, you know, and that’ll be afternoon or late morning here. And so we can literally look at something that they just finished today and send a summary to their supervisor or people at the national program level, and they can look at this, and we can flag issues for them, and they can call the teams and say, “Hey, I noticed that you were having trouble collecting GPS,” for example, “so tomorrow just be sure that you’re standing outside of the… Like, don’t be under roof and don’t be under a tree when you’re collecting GPS,” you know, things like that. So we can maintain this real-time feedback loop between our team and the country. So that’s a really, really cool, you know, illustration of how helpful electronic data capture is.

And so once data collection is completed for a district, for example… So our team at ITI works with the national programs to resolve any remaining cleaning queries. After all that cleaning stuff is worked out, we analyze the data by district and provide prevalence of active disease, which is called TF. And so we’re able to adjust that, you know, using sound methodology that’s been approved by WHO and all the, you know, other scientific groups involved. It gives you a more accurate view of the presence of the disease based on the population in that country, but we also provide the adjusted prevalence for trachomatous trichiasis, which is the advanced form of the disease that leads to the blindness.

So we provide them with these analyses, including confidence intervals, including some additional things that’s just part of the service. And then these data and these results help them with all their programmatic meetings, and then they go to everyone involved, and they say, “Okay, this is what we’re seeing in this district. What are we going to do?” And we also collect household-level data about, you know, water and sanitation, so those can inform any WASH efforts that are being done in the area. So, yeah, it’s a pretty cool output they get, and it really does help them in planning.

JESSICA

At the district level, there are teams that are having these handheld devices, right, that are using the Tropical Data app. So what sorts of data are being collected there? And, you know, is every country filling out the same survey form or are they different depending on which country they’re in and what languages are available?

BECK

Well, we have a standard survey, and we don’t deviate much from that, but we’re starting to incorporate different kinds of questions and hopefully some other diseases will be incorporated. For example, LF, lymphatic filariasis, is one we’re working on incorporating right now. And you said that the district level is actually the household level so…

JESSICA

Okay. Wow, yeah. It’s even more specific.

BECK

Yeah. So each district requires a certain number of villages to be pulled in, and then each village requires a certain number of households. So all this is randomly selected, and then they go household by household in a village and examine every one in the household. Now, the way the survey forms are done, they’re kind of hierarchical. So, you know, you’ll have the village-level survey, which is just putting in the codes and stuff. And then the household-level survey, which we collect GPS and we collect head of household name. We collect all those water and sanitation things. So, you know, like, what’s your water source in the dry season for face-washing? What is it for hand washing, for general washing? And then, you know, what, kind of, latrine do you have? And then they actually go and observe what the latrine is, which latrine is used. We also ask what’s done with child waste, stuff like that. So these things were, kind of, driven by the WASH community to add them, which is cool because some pretty cool analyses have been done to show if either of them are connected to active trachoma.

JESSICA

Because you have the ability to do the mapping, like you were talking about before, and see geographic distribution.

BECK

Exactly. And, again, the standardization thing. Somebody can do a global analysis because they know that the same methods were used everywhere, and the same training was done in all of that. So, yeah, that’s the stuff we collect on the household level. And then by resident, as of now, is the trachoma data that are standard. And so we’re collecting resident name, age, sex, and then three different measures of trachoma.

JESSICA

Tropical Data and the resulting information play key roles in trachoma elimination strategies worldwide. I asked Beck to explain how these data are used and how having more timely data has made changes and how ITI and its partners do their work.

BECK

Like any donation program, we want to be able to send what we’re donating—in this case, treatment—where it’s needed most urgently and as quickly as possible. So, intertropical data. So with this platform, we can rapidly identify areas that warrant treatment as well as areas that once warranted treatment and are now free of active trachoma. So, you know, scaling up and scaling down at the same time.

We very much value agility in our program, so we need to know where trachoma is a public health problem quickly so that resources—in this case, antibiotics—can be put on the fastest path for the people who need them the most. Something else the data are essential for is that project planning around achievement of the elimination milestones. So if we’re able to collect data quickly and determine where active trachoma is being eliminated, we can use those situations or, you know, those examples to determine how many rounds of mass drug administration will be required in other places to achieve the same results.

So having this constant flow of standardized data into this WHO managed database that we host here at ITI, it’s allowed us to combine treatment data and survey data into this smart and fluid model that helps us predict when and where trachoma will be eliminated so we can, kind of, predict how much drug will be needed and, you know, kind of, think about our strategy, where we need to focus hard first the most, at what time, and stuff like that. So constantly receiving data allows us to change the model if we need to and rethink. If what we’re seeing a year from now is different from what we’re seeing right now, then that just helps us plan for the future.

JESSICA

Yeah, I think that’s really exciting and, like, kind of, a shift from how things have been done in the past because if we’re relying on, kind of, traditional survey data that may have up to a year lag, then what you’re using today is not really the picture of trachoma in a place today. It’s what the picture was a year ago. So this really, kind of, helps look at what’s going on in real-time.

BECK

Absolutely. I’m glad you mentioned that because that was a huge problem before is, you know, somebody would collect data, and then a year later, they would be available to all the decision makers and then they would say, “Okay, but this was a year ago. So it could be worse. It could be improved.” I mean, who knows, you know? So it does give you that real-time feed into the situation on the field.

JESSICA

Of course, data are only one piece of the puzzle, and there are hundreds of dedicated professionals working together to eliminate trachoma by 2020. The Tropical Data app and its forerunners help them do this important work faster and with a greater level of confidence in the information available to them. I had a few more questions for Beck. How does she define informatics? Does she even think of her work in terms of informatics?

BECK

Oh, the million-dollar question. So I’m kind of cheating because I asked you this already but…

JESSICA

No cheating, no cheating in informatics. We’re all just going in together.

BECK

My impression is that it’s using information and technology to strengthen systems. In this case, health systems.

JESSICA

So it’s interesting. So in your day to day work, I mean, let me know if I’m wrong about this, but it seems like you don’t really think about informatics as being, kind of, like part and parcel to what you do. Even though when I hear it, I’m like, “Oh, this is an informatics project.”

BECK

I totally think it’s informatics. I thought, “Ooh, informatics, I love information and technology, and that’s what it sounds like,” so that’s what it is. Good.

JESSICA

Yeah, that is what it is, Beck. Thanks to you and your whole team at ITI for sharing this example of public health informatics at work. If you, listening at home, are interested in learning more about the international trachoma initiative and global efforts to eliminate trachoma, please check out their website, trachoma.org. This podcast is a project of the Public Health Informatics Institute and the Informatics Academy. Visit phii.org to learn more about all of our work. You can also find us on Facebook or follow us on Twitter @PHInformatics. Today’s background music was composed by Kevin MacLeod. Thanks, as always, go to our production team, especially Piper Hale, our producer who is always driven to tell the stories of the data-driven. I’m Jessica Hill and you’ve been informed.

BUTTON

JESSICA

Voice over number two. Three, two, one.

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