With the neonatal ICU (NICU) admission rate for babies in all weight categories increasing 22 percent between 2007 and 2012, to 78 admissions per 1,000 live births, parents want and need reliable information they can use to understand what’s going on and how to best care for their babies during this scary and stressful time.
One organization whose mission touches on this issue is the March of Dimes. As the Arlington, Virginia-based not-for-profit organization explains on its website, “March of Dimes leads the fight for the health of all moms and babies. We believe that every baby deserves the best possible start. Unfortunately, not all babies get one. We are changing that. For 80 years, March of Dimes has helped millions of babies survive and thrive. Now we’re building on that legacy to level the playing field for all moms and babies, no matter their age, socio-economic background or demographics. We support moms throughout their pregnancy, even when everything doesn’t go according to plan. We advocate for policies that prioritize their health. We support radical improvements to the care they receive. And we pioneer research to find solutions to the biggest health threats to moms and babies.”
With regard to its history, March of Dimes goes on to explain on its website that, “What began with President Franklin D. Roosevelt's personal struggle with polio led to the creation of the National Foundation for Infantile Paralysis, better known as March of Dimes. We pioneered the vaccine research leading to the eradication of polio in the U.S., and then we shifted focus to address some of the biggest health threats to moms and babies with innovations like folic acid, newborn screening and surfactant therapy. Today,” the organization states, “we educate medical professionals and the public about best practices; we support lifesaving research; we provided comfort and support to families in NICUs; and we advocate for those who need us most, moms and babies. We are stronger and more committed than ever to guiding moms through every stage of the pregnancy journey. We are fighting for the smallest among us and advocating for their health each and every day. And we do so with the tools, technology and knowledge needed to build a brighter future for us all.”
It is in that context that in 2018, leaders at the March of Dimes (MoD) turned to MobileSmith Health for the app blueprints to help the organization develop the My NICU Baby mobile app. According to Kimberly Paap, manager of product development in NICU innovation at the March of Dimes, “Google can be a dangerous place to research medical information, but we know everyone does it. This app puts vetted, reliable information in the hands of those who need it most—when they need it most.” With the development of the My NICU Baby mobile app, MoD has control over the information to make sure it’s accurate, informative and actionable.”
Among key elements of the app’s creating and development are the following:
Ø By using app blueprints, MoD staff – not coding experts – built 90 percent of the app themselves
Ø Information is divided into nine sections, with resources on caring for babies in the NICU and at home, infant development, preparing to take baby home and a glossary of terms. Other sections include videos for parents and a section on loss and grief
Ø The Tracker section includes a pumping and feeding tracker, kangaroo tracker and weight tracker that parents can use to monitor these important facets of a baby’s daily life
Ø Parents at participating MoD NICUs can find support information, and everyone can peruse promotion offers from MoD partners such as hotels and diaper laundering services
Ø A Spanish version of My NICU Baby was released at the end of 2018
Ø The app does not exchange personal health information, so it is not subject to HIPAA privacy and security rules.
The March of Dimes’ Paap recently spoke with Healthcare Innovation Editor-in-Chief Mark Hagland regarding this initiative, and its context. Below are excerpts from that interview.
Tell me a bit about the origins of this current initiative?
We’ve had a program called NICU Family Support for 18 years. We’re in 60-70 NICUs around the country, providing support, comfort, and information. And a few years ago, people were saying, these printed materials are great, but what do you have that’s digital? And we have an online community called Share Your Story—families connected by loss and challenges. So we tried to put something in there, but it didn’t really take off. So one of my colleagues, on an exhibit floor, met MobileSmith, and they offered an app that you didn’t have to code.
So this was something that we could afford, and MobileSmith worked with us. And we brought the idea of building an app to our team, and pushed it up to leadership. And initially, the idea was to provide content. And so it’s information about when your baby is in the NICU, as you get ready to go home, and arrive at home. It includes information on 30-40 common conditions in the NICU, plus a glossary, plus tips on how to care for your baby in the NICU, there’s a strategy called Kangaroo Care. It’s educational content that mirrors what’s in the book we already created. But clearly, in the app, you need to engage people beyond information. So families can track their babies’ feedings, nursing sessions, breastfeeding sessions, pumping sessions for mom. And we were able to get additional funding through a grant, and worked with MobileSmith to create an NPI—native plug-in—special code outside MobileSmith’s standard platform. In other words, they created custom code, to make it more user-friendly and visually more appealing, we added things that people would find useful, even a timer when people are nursing or pumping.
There’s also a section on the app that highlights the NICUs that we work with. And because those hospitals are partners, we wanted to give those hospitals some real estate to highlight their organizations, so that information is included as well. And we have some videos. And some people can create photos and share them from there. And we have corporate partners; Hilton is a corporate partner, so on that app, we were able to partner with them to offer discounted rates to NICU families.
Tell me about your organizationn’s ongoing commitment to being a presence in NICUs. It speaks to your core mission, correct?
Yes. At the March of Dimes, we’ve been leading the fight for the health of moms and babies, and we advocate for programs that support them. We’re advocating for healthy moms and babies; and if a baby goes into the NICU, we want to support the family there. And in NICU support, we try to be holistic. We want to partner with staff to create a good family and patient experience while they’re in the NICU.
How many families have used the app so far?
We measure that volume in downloads. In our first year, 2018, we had more than 10,000 downloads. Technically, we went live at the end of January; but we launched in May of 2018. We were slowly integrating into our work, and getting feedback. And the beauty of the MobileSmith platform is that you can go in and make changes, and during that time, we had the ability to be responsive, to make tweaks to the app. We also went through a total rebrand of March of Dimes at the time—our logo changed, our colors changed, our visual image changed.
How have families liked it?
We’ve had great response by families. They love the tracking function. And it can help with conversations—if your baby is born on the early side, you’re looking for input from the clinical staff about how much milk you’re pumping, or how fast your baby is growing. And families simply feel supported that they have educational content in the app. They’ve had a great response. And we’ve heard from families who had previously been in the NICU, that they would have found it extremely helpful. And we’ve had good feedback from staffs as well.
We have a lot of good, solid information; we don’t have all the bells and whistles we could possibly have, because there are budget limitations. But we put our money where it could best be used.
What have the biggest lessons learned so far been?
We pilot-tested it. And we learned that putting the right product out there was more important than rushing something to market. And some people wanted us to rush, but we needed the feedback from the pilot testing. So, a lesson learned was that taking our time paid off. And also that you can still get a good product on a budget, if you prioritize what you want to do, and get the core content there. We’re doing what we set out to do; we just had to be really intentional about it, and get feedback from the staffs in the NICU, and also, at our NICU family support sites, we have a coordinator who manages the program with the staff. Some of the time, they’re March of Dimes employees; some of the time, they’re hospital employees. And they’re intimately, constantly in contact with us. They’re great stewards of sharing the information, and provide great feedback from the families, to us.
And that person is there on the ground? You can get feedback from families through them?
Yes, absolutely.
What’s next in the ongoing evolution of this program?
At the end of this month—we’ve worked with an individual who’s an employee of Cigna, who has a fellowship, and we’ve worked with her to put some children’s books that can be put onto the app. One is about “kangaroo care” (skin to skin, baby lies on mom’s or dad’s chest); one is a sibling book, because babies often have siblings; and there’s one about hopes and dreams. And reading is a great way for parents to bond with their baby. The baby learns their voice, and they can bond. And they’re short, they’re the length of a board book, about 12 pages.
How does what you’ve learned tie into any future directions for the organization?
One of the things we’re working on as an organization, is creating a sense of community. We’re working on how to strengthen our families in general, but especially our NICU families. So that’s one of our goals, to strengthen connections with those families, and to provide support for them. So, creating a community is a priority for the organization as we move forward.
