JESSICA

Welcome to Informing Informatics. I’m Jessica Hill, and I’m super excited to be joined on the microphone today by our producer Piper Hale. Hey, Piper!

PIPER

Hey, Jessica!

JESSICA

So Piper, you actually are the person who got to interview our very special guest for this episode.

PIPER

Yes, that’s right. So last month, I got to sit down with Therese Hoyle who is an IIS Consultant and former IIS manager for the Michigan Care Improvement Registry called MCIR. Therese has worked in the field of Immunization Information Systems for over 20 years so I was really excited to talk with her about how the field has changed in that time and new developments she sees on the horizon.

JESSICA

I’m excited for listeners to get to listen to this conversation with Therese but before we dive in, I heard you use the term “IIS” and I also heard you say “immunization information systems” so I’m kind of figuring that those are the same things but could you just clarify what is an IIS?

PIPER

That is a great question. So in an earlier episode of the podcast, we talked to Maribeth Carrillo. And in that episode, we talked a little bit about what an IIS is. But as a refresher, if I may borrow some language from the CDC website, “an immunization information system is a confidential computerized database that records all immunization doses that providers administer to individuals.”

So basically, providers can look up a person’s immunization record through the IIS, which can then help them determine if a person needs certain vaccines or other clinical decisions. And at the population level, IIS provide aggregate data for surveillance and other public health activities, and most states have their own IIS.

JESSICA

Yeah, they’re usually based on geographic regions.

PIPER

Right, exactly.

JESSICA

And so they’re kind of a big deal in public health.

PIPER

Yes, IIS are kind of a big deal in public health, and Therese is kind of a big deal in the world of IIS, which is part of why I was so excited to talk with her. So I started out by asking Therese how she started working in IIS in the mid-’90s.

THERESE

You know, it was really amazing because I used to work HIV and AIDS and I worked in community health. And when I left there, I actually took the summer off and started looking for work in public health and this immunization registry job was in the paper. I had no idea about immunizations or registries. I applied and when I was interviewed, one of the interviewees said, “What do you know about computers?” And I said, “I know Word.” And he said, “That’s great!” And he said, “Anything else?” I said, “No, that’s about it.”

So it was really exciting because the IIS was in the business requirement stage and so it hadn’t been developed. I had no idea what we were talking about because I had never seen one. And so we were developing marketing materials to sell something that we didn’t know if it worked. So it was exciting. It was cutting-edge and I learned about immunizations, which I had no idea how complicated they were to, you know, to learn about it.

But my favorite story about immunizations is the public health nurses and the government support. A couple of them worked in HIV and AIDS and I knew them. And I remember saying to them, “Oh, this is gonna be such a great job. It won’t be political at all” without knowing because HIV was so political, you know, in the ’90s, early ’90s. And it was sort of like I was gonna take a deep breath and not worry about politics, just public health.

PIPER

Oops!

THERESE

Yup. It was a wonderful start to my career.

PIPER

And this was at the Michigan IIS?

THERESE

Michigan IIS and it was called Michigan Childhood Immunization Registry then. And I worked in Kalamazoo at a regional level and I trained over five counties and I just went door to door. So I started in ’96 and in ’99, I was hired at the state and became the state coordinator and I did that for nine years. There was no, like, “How to do things?” You just sort of, you know, tried.

I am amazed at all the different health systems out there in public health, the large public health databases. And one thing about immunizations is that private provider partnership. You know, a lot of databases don’t have a connection like we do to private providers and we’re not collecting data just for surveillance. We’re giving them a tool to use for clinical decision-making. And that makes a huge difference so I think we’re very unique and I think that’s truly why our participation levels are so high. We are of value. We’re not a one-way feed. We’re giving back data and I think that’s very important.

PIPER

Yeah. I hear a lot of public health programs talking about wanting to build these bio-directional information exchanges with private practice and how they, you know, want to establish these kind of programs and I’m thinking IIS has been doing this for a decade. Maybe talk to these guys.

THERESE

That’s how I feel. I feel like they know we’re out there but other public health programs sometimes don’t have the knowledge of how much we do. They just know that providers participate and that we store immunization records. But we’re so comprehensive and we offer so much more in many cases on immunizations today.

PIPER

So you’ve been in the field for much longer than a lot of IIS folks that I meet. So I was wondering if you could tell me some of the changes you’ve seen in that time. What are some of the really significant changes that have been going on in IIS since you started?

THERESE

I think the first change is people accepting the internet to store health data. And when we first started, I have to admit, we were so afraid of the internet. So in 1996, it was great to be able to email. But to have to store personal health information was so far from our thinking that we were still at that mode of how do we store it securely on a database? And we were installing software and we knew that this internet was out there and a possibility but providers didn’t have it so we had to use dial-up modems. And then we went to the internet. Providers didn’t jump on board. So they still used the old modem, dial-up, very slow connection.

And then as more and more providers purchased internet services, then they were scared about staff time on the internet. So it became a barrier so we really had to get past trust, you know, trusting the internet, trusting the employee. So we had to force people to the internet even like five years later, which would have been around 2007, there were still providers who just would not go.

But today, I think the most exciting thing that I see is how providers are really engaged in exchanging data electronically and clearing and being able to have that data come back into their AHR. And I used to talk about this 15 years ago hoping we could do this, knowing technically we could. But could we get the equipment in the offices to do it basically? And interoperability has been great. I think that’s the best thing for the immunization world.

PIPER

So switching gears a little bit, as you know, there has been some outbreaks of measles in Minnesota and I’m wondering what is your reaction when you hear about these outbreaks?

THERESE

Part of my career, I was able to participate in serve on the board of directors for Every Child By Two. So I really began to notice the communication it takes to reach the parents that just are so afraid of vaccinating their children. And it concerns me a great deal to see the outbreaks to this time. I do see where young parents don’t see this anymore, this disease, and I truly feel that because it’s not visible anymore, that we’re doing such a good job preventing it, that they don’t think it’s there. I do feel IIS does have a big role on it.

One thing in Michigan, we’re really fortunate because the IIS is in all the schools and daycare. And the investigators that we have during an outbreak, they live in the IIS and so do our field staff, organization field staff. And to me, they have taught me like what is the best way to look at the data and how they need the data quickly and efficiently. But they also work with the providers and take the data from what they discover from the schools who work in the community, to locate records in case they’re missing. And so to me, that truly has helped.

If people don’t use our IIS for surveillance purposes in outreach, they’re missing the boat. They just have to. And some people are afraid they don’t have enough data but it doesn’t matter. If you have just a little bit of data, it saves that much time that you can at least reach as many children and look at their records, and then do the paper trail after. It will reduce your work by 50 percent probably. So I think that the surveillance piece of the IIS is really what we have to do.

PIPER

What are you most excited about for the future of IIS?

THERESE

I love consumer access right now. I think we are getting there and we’re so good at reaching providers. But now, to reach the parents is so important. And to reaching just individuals, just anybody with consumer access, I see consumer access is really big. I see the cloud environment as another really good move, I think, for a lot of IISes. I also see the possibility way down the road of regionalizing the registries. They’re very expensive to operate.

In a lot of people who I talked to, I’d say the age group 35 and under, the first question they have is, “Why do we have all these systems? Why don’t we have just one?” They don’t understand the complexities of 20 years of just trying to get these, you know, 64 up and running. But I agree. I think we’re moving into a time where people are comfortable with their data in the cloud and a server not necessarily government-based. But they understand that I think a regional IIS could happen. And I’d like to say that they could save money and I think our community works so well together, they could make it happen.

PIPER

That’s a very inspiring vision for the future. I love it. So you’re very embedded in public health and the immunization information system world so I’m wondering, has there ever been a time outside of your work when you saw public health informatics in action just in your daily life?

THERESE

So in February, when my grandson was born…

PIPER

Congratulations!

THERESE

Thank you. He, my daughter, and son-in-law went to a visit at Five Days [SP] and they brought home the immunization record of Dmitri was in the registry. So his birth record went in, his first hepatitis-B, and that’s what he was handed. And I thought to myself, I remember working on this 20 years ago thinking, “Wouldn’t it be nice if parents were given that first record?” And you know, we had to get that birth record log going. We had to get the hepatitis-B shot in from the hospital. And today, it’s just common practice. It’s a standard of care so I was very proud, yes.

PIPER

How did it feel to see this system that you’ve poured so much energy and attention to over the years directly touch the life of someone you love?

THERESE

Oh, it was just amazing. And I said to Monique, “Did you ask for that?” And she said, “No, Mom. I get it every time I go in. They told me, ‘Every time you come, you’ll receive your immunization record.’” And she has for every visit.

PIPER

So this is a question that Jessica, who’s usually doing the interviews, asks all of our guests. It’s kind of a big one. So how do you define Informatics?

THERESE

It’s the knowledge and understanding of how data is collected, how it’s processed. And when I say processed, I mean, the added checks, the quality component of it, and then how it’s stored in the security. And then how do you retrieve it to make it useful? So it’s really, to me, the understanding of how that workflow works and then understanding the end user who has to use it. So it’s a little bit of computer science, it’s a little bit of health education. But in the long run, it’s really about the outcomes. And you’re always focused on a good outcome whether it’s a health outcome, or if it’s a business outcome. It’s how that data comes in to your system and how you can manage it and use it for a good outcome.

JESSICA

Many, many thanks to Therese Hoyle for taking the time out of her busy schedule to be interviewed for our podcast.

PIPER

Absolutely. Thank you so much for sharing your perspectives on how IIS have changed over time and what we can expect in the future.

JESSICA

This podcast is a project of the Public Health Informatics Institute and the Informatics Academy. Visit phii.org to learn more about the institute and all of our awesome informatics work. You can also find us on Facebook and follow us on Twitter @PHInformatics.

PIPER

And if you like the show, please consider rating us on iTunes. That helps other people find the podcast.

JESSICA

And as always, thanks go to our production team, especially our producer, Piper Hill. That’s you!

PIPER

That’s me!

JESSICA

I’m Jessica Hill.

PIPER

And I’m Piper Hale.

JESSICA

And you’ve been informed.

BUTTON

PIPER

Thank you so much, Therese.

THERESE

Thanks.

PIPER

I will now release you to go eat pizza. Thank you so much.

THERESE

Thanks, Piper.