INTRO

JESSICA (INTRO CREDITS)

Public health informatics is the science and the art of taking raw data and turning them into useful information for health policies and programs. It takes all those data out there and turns them into knowledge of how people can live healthier lives. But how does this process work? My name is Jessica Hill and I work at the Public Health Informatics Institute in Atlanta, Georgia. This podcast is my quest to learn about informatics and how it’s made people’s lives better, how has it made my life better and really why does it matter. So, I’m ready. Inform me, informatics.

JESSICA

Hi, this is Jessica Hill. In April 2016 I had the very good fortune of attending the national meeting of the American Immunization Registry Association also called AIRA. I attended a lot of great sessions at AIRA and I even led one myself, and one of the presentations really jumped out at me. Sudha Setty from the Minnesota Immunization Information Connection spoke about the ways her department used immunization information system data to explore questions related to health equity. Her presentation was called “Using IIS and vital statistics data to measure racial/ethnic immunization coverage disparities in Minnesota.” So, the analysis not only provided a clear picture of differences in immunization rates among populations within Minnesota, it also led the Minnesota Department of Health to engage in new community outreach activities. As I was listening to Sudha’s presentation, I was thinking, “Wow, this is informatics in action. We have to make this into a podcast.” So, I was so very grateful when Sudha agreed to sit down with me the next day. Without further ado, here is our conversation.

JESSICA

So Sudha, thank you so much for being here.

SUDHA

Thank you.

JESSICA

And would you tell us a little bit about your job at Minnesota?

SUDHA

Sure. I’m actually the AFIX coordinator for the Minnesota Department of Health’s immunization program. So primarily my job is to administer the CDC AFIX program, you know, quality improvement at the clinic level, looking at immunization coverage rates for those clinics that are enrolled in our vaccines for children program, but with our new emphasis at MDH on health equity, which I will touch on a little later as we go forward in this conversation. I’ve had the opportunity to get into a lot of analysis, looking at gaps in immunization coverage based on race and ethnicity categories.

So, one of the great parts about working at the Minnesota Department of Health is that targeting and eliminating health disparities is just a huge major organization-wide objective for the whole department. And our commissioner has had a lot to do with that. He helped establish the Center for Health Equity at MDH in 2013 and has made advancing health equity an essential goal for Healthy Minnesota.

JESSICA

And is MDH the Minnesota Department of Health?

SUDHA

Yes, it is.

JESSICA

Okay.

SUDHA

Yeah. That’s probably what I’ll just keep calling it throughout the rest of this podcast.

JESSICA

Perfect.

SUDHA

MIIC is our Minnesota Immunization Registry. We decided to focus on looking at immunization rates within our Somali community. They’re a very large minority group. And one of the reasons we decided to focus on immunization rates within that community was because of some increasing anecdotal reports from our immunization providers saying that some Minnesota Somali families were refusing the MMR vaccine for their 12-month-old children. These hesitancy issues have been around, like floating around for a while but they really came to the forefront in the summer of 2008.

JESSICA

Okay.

SUDHA

A local news network featured a story about Somali parents who were concerned that there was a high rate of autism amongst Somali children enrolled in the Minneapolis early childhood special education programs. So, during that story, you know, they were getting quotes from families and things like that and one of the Somali parents came out and said, “Oh, it’s the vaccines.” So that was troubling. You know, that’s definitely a misperception that we’ve been battling for so long, that vaccines cause autism. But it was clear that this was a major concern for this community, and we wanted to meet it head on and try to address those concerns.

So, the immunization program at the Department of Health listened to the concerns of Somali parents, that they were seeing the special-ed child classrooms just filled with Somali children, so the Department of Health reviewed the enrolment data for that program, just to learn a little bit more. And in 2009, we did report and found that the enrolment data did show higher numbers of Somali children enrolled in this program compared to non-Somali children. However, there were a lot of caveats and limitations that were just not well understood when those study results were communicated. It was just lost. It wasn’t just the Somali community misunderstanding it either. It was the way that the study was communicated about in general by the local and actually national media. And a couple of parent advocates were quoted as saying that autism rates were almost six times higher in the Somali community and that’s simply not the case. It was a massive information tangle. It was hard to communicate it.

JESSICA

I guess it would also be helpful to say that there’s lots of parents across the country that are having these, like, discussions and it’s certainly not specific to Minnesota but…

SUDHA

No, and not to this community either.

JESSICA

Yeah, yeah.

SUDHA

So, in that 2009 study I was talking about, it just kind of added fuel to that fire, you know. We couldn’t address those misconceptions in the right way. So, we actually started to hear about even more reports from primary care providers about Somali parents refusing the MMR vaccine. Also, like, all 12-month shots, so including varicella, because, you know, it was just a point in time that they were concerned about and that happened to…those happened to be the vaccines at that point.

And on top of all that, in 2011, things really came to a head because we had a measles outbreak in Minnesota in which 8 of the 21 cases were of Somali descent, and this prompted the specific data analysis project to look at where the gaps were in immunization coverage for MMR specifically, but we eventually expanded it to all vaccines, to look at Somali children and non-Somali children.

JESSICA

Okay. Time out. Sudha and I talked a lot about the methodology of this project and I’m going to try to give you a basic overview. The main question was whether children of Somali descent born in Minnesota, that’s children with at least one parent who is Somali, had different vaccine coverage rates at 24 months of age as compared to children of non-Somali descent born in Minnesota in the same year. The plan was look at all the babies born in Minnesota in a given year, then group them into babies of Somali descent and babies of non-Somali descent, and look to see if when those babies turn two years old, if there’s a difference in the vaccine coverage rates. You’ll hear Sudha refer to any difference as a gap in coverage rates. Seems pretty straightforward, but when they looked at the data in the Minnesota IIS, they found that the fields for race/ethnicity were often missing. And on top of that, the information that was in those fields, descriptions like white Caucasian, African American, Hispanic, weren’t going to be able to tell the team whether one or both of the baby’s parents were Somali. So, to get more specific information, the IIS needed to work closely with vital statistics. Why? Because that information was on the baby’s birth certificates.

So once Sudha and her team had all the information, they compared the coverage rates for babies born in 2004 and then 2005, and right on up to the babies born in 2013, because babies born in 2013 turned two in 2015, which is the last year for which there was complete data. So that’s a lot but if you’re interested in learning even more about the methodology, we put a link on our website to Sudha’s original presentation at AIRA, and you can also see the graphs that she’s about to explain.

Okay. Time in. take it away, Sudha.

SUDHA

So that was we had race/ethnicity, distinguish who’s Somali, who’s non-Somali, and we had the immunization record as well. And then, we ran the up-to-date rates for…up to date by 24 months for each of the childhood vaccines. We were, you know, mostly interested in the MMR and then the varicella rates but we decided to look at all childhood vaccines across the board just to see if there was any other gap that would show up. And then we compared the rates for each birth cohort and each category, you know, children of Somali descent versus children of non-Somali descent, to just see if there was a disparity between the two groups. And we did that for every year.

JESSICA

So, what did you find?

SUDHA

There is a gap in coverage between children of Somali descent and children of non-Somali descent for MMR vaccine and also for varicella vaccine. And I know this is a podcast so you can’t really see the graph here, but I’m just going to walk through it and hopefully, I’ll paint a picture just with my words.

So, there’s actually fairly similar coverage between the children of Somali descent and the children of non-Somali descent until 2006. So, you know, we’re going along until 2007, where there’s a slight drop for the Somali children, and then in 2008, it drops dramatically. In 2006, it looks like their up-to-date rate was 87%. 2007, it’s 84. In 2008, it slips 14% to 70% coverage for those two-year-old children.

JESSICA

Wow, in a span of two years?

SUDHA

In the span of one year, that 14…yeah.

JESSICA

In the span of one year, okay, wow.

SUDHA

Yeah. And then it keeps going down every year after that, all the way up until 2013. And in 2008, that was the same year that the Somali community’s widespread concern about autism was made public through that local news story I talked about right in the beginning. And the rate for MMR coverage for the Somali…the children of Somali descent, each of their birth cohorts continues to plunge all the way to the present day.

JESSICA

Oh, still?

SUDHA

Well, I mean, to 2013. So, for the children born in 2013…since we’re now in 2016, everybody born in 2013 would’ve turned two.

JESSICA

I see.

SUDHA

So, by the end of this year, I’ll be able to take a look at everybody born in 2014 and see whether or not that still remains true for the two-year-old children.

JESSICA

What percentage of those children have had one dose of the MMR by the time they turned two?

SUDHA

Yes, yes, yes.

JESSICA

Oh, interesting.

SUDHA

So, the graph is pretty dramatic but people who are of non-Somali descent, 88% of them have a dose of MMR by the time they’re two, but only 45% of children who are of Somali descent are immunized with one dose of MMR by the time they’re two. It definitely leaves the Somali community’s most vulnerable members in danger from another measles outbreak.

JESSICA

Yeah. Like the one that had happened in 2011?

SUDHA

Yeah.

JESSICA

Yeah. Were those statistically significant? Is it…yeah.

SUDHA

Yeah, the drops encourage and I think we published a staff in pediatrics paper in July of 2014, that drops in coverage, both for MMR and varicella, the 2008 drops were statistically significant, yes. The downward trend continues for MMR, but it doesn’t seem that parents, Somali parents have an issue with other vaccines. DTaP and pneumococcal conjugate vaccine rates seem to be comparable to the rest of the population for children of Somali descent. So, it seems to be…

JESSICA

It’s this particular vaccine.

SUDHA

Yeah. It seems to be very vaccine specific. So, it’s not like all immunizations are bad. There’s not that perception at all. It’s just this particular vaccine. So yeah. It was good to see that the rest of the rates do still remain the similar to the rest of the population. That was reassuring.

JESSICA

So, I guess through these analyses, there is sort of a perception that…from talking with providers, there is a perception that perhaps Somali parents were refusing this MMR vaccine more frequently than other parents. So, this analysis was really to test, like, is that really the case. Instead of kind of making decisions based on those reports, it was like do our data actually show this in the registry. But then they did.

SUDHA

They did, yeah. This is where we started with anecdata, right.

JESSICA

Okay. Yeah.

SUDHA

Those anecdotal report that we take as data. And we were able to back it up with real data using our MIIC immunization records and our vital statistic records.

JESSICA

I think it’s kind of interesting that…okay, so the registry itself is sort of, like, a repository for the data but then it’s how that data get…or how those data get used is kind of, like, the next step in the process. So you work at the Minnesota Department of Health and you have these results. What kind of happens next? Other than you present at the AIRA national meeting.

SUDHA

Well, that’s when our outreach team takes over. We put these findings into action by responding, at first, in a way that’s fairly typical for state or local public health providers, you know. Broad education pieces, media public service announcements targeted at the Somali community. We did make them, you know, culture specific and we also did a lot of travel PSAs. We developed a video interview of a Somali mother of a child who almost died of measles, and we also developed a diverse media project. So, we created messages with multiple ethnic and racial media outlets, radio announcements, you know, news articles and ads. And those were, you know, well received. We know that they were being viewed. They had a lot of visibility within the community.

But the Somali immunization rates, by 24 months, continue to decline for MMR. And so, we decided to regroup. The outreach team decided to regroup. We saw another drop in 2012 in rates because, you know, we had the ability to monitor these rates now because of this analysis. So, the immunization program decided to regroup and refocus those outreach efforts. They developed a cross-division team. So, I think one of the things I talked about during my presentation yesterday was how we can get so siloed even within state health department, you know. That’s why I was talking about vital statistics, how important that partnership was. We’re in totally different divisions. So, our partnership with them was great but this cross-divisional team aimed at outreach was also more effective and just the immunization program going at it alone.

Also, our immunization program hired Somali staff. So, an RN who was with our children and youth with special health needs and an outreach worker for the immunization program itself. So that was really helpful because, you know, we had more culturally competent members of the community to lend legitimacy to these outreach efforts. So those outreach staff that I was talking about conducted several key informant interviews, met with Somali health professionals and spiritual leaders, attended lots of community events to talk about immunization and autism concerns and so on with Somali parents. And a lot of what they gleaned from those casual conversations with parents was really important. It gave some context for the data and to why we kept seeing it drop.

So, a couple of things that our outreach team talked about was that parents, Somali parents say that they refuse MMR because they’re told by family and friends that MMR causes autism. You know, word of mouth and, you know, community sources of information are very important to this community. And so, they’re told not to get the triple letter vaccine because it’s the vaccine that will stop children from talking. Our Somali outreach staff definitely showed us that Somali Minnesotan parents were strongly influenced by their own communities and there is a lack of information, real good information and an abundance of misinformation readily available to the community. So that was a really huge barrier to overcome.

We currently have a new work plan for the immunization outreach team and this team has just done so much work to reengage leadership in the community and pull in interested health professionals who want to help close this gap. This outreach team is doing work to reengage the community, both at the parent and the leadership levels, so doing some parent peer-to-peer trainings and then forming the Somali public health advisors’ group, that includes health professionals and educators, parents and faith leaders. So having that buy-in from the community is really key, I think.

And then I think the outreach team is also currently conducting activities to prepare for and mitigate a potential outbreak with the Somali community if measles…if another measles outbreak happens. You know, they want to increase community awareness about this disease, some internal planning and outbreak response plan dissemination with our local public health partners, and then continued outreach with our Somali partners and members of the community.

So yeah. It’s a lot of work for our Somali outreach staff and I just want to acknowledge them at this point. Lynn Bahta, clinical consultant, and Hinda Omar, Fatuma Sharif-​Mohamed, they… Hinda is our current outreach worked in the immunization program. Fatuma used to work with us too in that same position. And Elham Ashkar, she was the RN, and I’ve heard her speak so many times and she’s just a wonderful, brilliant speaker, very magnetic. So, they have done so much of this outreach work with the data that I analyzed. So, it’s great to see them in action.

JESSICA

What about this project really jumped out at you?

SUDHA

Oh, yeah. So, it was always my passion. You know, just going into public health to address gaps in health equity and to bring everybody to true equity, you know. It’s ridiculous that with the finest health system in the world that it costs us so much and does so little for our most vulnerable. So, I liked this analysis. It brought me back to tap into that passion and that initial drive to be a part of public health. So yeah. That’s why I was so excited by it and that’s why, you know…

It’s funny, this is not my primary skill. My primary skill is in quality improvement and training and outreach. It’s mostly, like, going out there in the field and doing AFIX visits and talking to providers. This sort of analysis of looking at gaps and spending my time in front of SAS, clicking on things and being excited by the numbers, that’s not normally what I do but I just… This project, you know, forced me to learn new skills and it just was very satisfying.

Well, I think we want to take a look at making sure that we’re not continuing to overwrite or lose any race data already in MIIC. I think I touched on this a little earlier but I’ll just say it again. Our race and ethnicity data that we’re storing in the MIIC tables appears to be overwritten by incoming messages from providers. So, we get race and ethnicity data from vitals for new babies, but when new providers send in shots for those babies, they might send us a race or ethnicity as other or unknown, and that other or unknown seems to either erase or overwrite whatever categories we’ve captured from vitals.

So, our first goal will be to create new fields to lock in the vitals’ race and ethnicity. So those won’t be touched by data exchange or any income stuff from providers. So that will be goal number one. Goal number two will be to figure out why things are being overwritten. And then outside of the whole data quality/data exchange piece is to expand this analysis and look at different race and ethnicity categories and different age groups and different vaccines.

JESSICA

All within eyes towards understanding what groups might be most vulnerable to a potential outbreak?

SUDHA

Yeah, absolutely. And heading that off beforehand, you know. Working with our outreach staff to see if there’s something we can do for any other gaps that we see.

JESSICA

That’s really, really fascinating.

SUDHA

Yeah.

JESSICA

I think you’ve answered all of the questions that I had prepared before but is there anything else you think would be important for people to know about the project or any just things you would like to share?

SUDHA

Yeah. Well, I did mention that this was a successful project and something we want to carry out in the future. But a couple of other of our lessons learned was to, you know…checking the quality of the race and ethnicity data already in the IIS. So, if you want to do this with your own states or own jurisdictions’ IIS, make sure you check the quality of that race and ethnicity data. And if, you know, you don’t already develop a good relationship with your vital stats people, because they’re the ones that have the ability to give you back some of those race and ethnicity data.

JESSICA

Pretty vital.

SUDHA

Yeah. Literally. Nice joke. Nice data joke. Very good. But in addition, you know, race and ethnicity and health equity can be potentially sensitive. You want to avoid using accusatory and stigmatizing language regarding community beliefs and views.

You know, the Somali community has been a part of Minnesotan life just recently, like, within the last, you know, 10, 20 years. Recently in the grand scheme of things, I guess. And they’re an important part of our modern city and our diverse city and we want to make sure that there’s no stigmatization. You know, you don’t need that. You want to avoid having that kind of language.

You want to also have a culturally competent team to use this data, communicate about it, and really, recruiting and working with members of the impacted community is definitely going to make any outreach way more effective. I am so glad we have Asli as a partner. I’m so glad we had Fatuma and we currently have Hinda because they are the ones that do the groundwork, the fieldwork. They’re the ones with the legitimacy being Somali themselves. And, you know, they’re mothers and grandmothers too, you know. They don’t want to see an outbreak in their own community that would affect their children and their friends’ children and their families.

JESSICA

And very special thanks to Sudha Setty from the Minnesota Department of Health. Sudha, I really enjoyed our conversation and I admire your commitment to health equity. The music in this episode was composed by Kevin MacLeod, including our theme music called “Carnivale Intrigue.” Thanks also go to Piper Hale, Kathleen Turaski, and the great folks at AIRA. Sudha also had some people to thank.

SUDHA

It was our communications team that really helped, specifically, our person tasked to deal with all of our MIIC stuff, web, presentations, communications, what have you, Elena Rosenberg Carlson who helped me shape my data and my bullet points into the arc of a narrative. She’s really great at that. And then my coworker Mary Muscoplat who told me not to be scared of SAS and just sit down and do it. She helped me a lot with the specific nitty-gritty of the analysis, but, like I said, it was new to me so she was a great help. And then my boss, Erin Roche, our IIS manager. She really, like, encouraged me to take this analysis and run with it.

JESSICA

Guess what? Dr. David Ross is coming back for an upcoming episode. He’s agreed to answer questions from you, our listeners. Got a question for Dave about informatics, maybe about public health in general? Record yourself asking your question and email the audio file to podcast@phii.org. Please send your questions by June 1^st. Again, that email address is podcast@phii.org. Thanks for listening to “Inform me, Informatics,” which is a project of the Public Health Informatics Institute and the Informatics Academy. Come find out more at phii.org. This is Jessica Hill and you’ve been informed.

BUTTON

PIPER

The podcast is going in a very unexpected direction.

JESSICA

What?