Infant, maternal mortality: How community input in tool development could save lives

Innovators are seeking new ways to address infant and maternal mortality rates, with a special focus on combating racial health disparities.​
By Laura Lovett
04:40 pm

Adorned with balloons and celebratory flowers, the maternity ward is often seen as the beacon of hope at a hospital. But for many families, childbirth is a challenging, dangerous and sometimes even fatal process for both moms and babies. 

This is particularly true in the US where women are more likely to die of a childbirth or pregnancy-related cause than any other affluent country in the world, according to the CDC

This crisis appears to only be growing in recent years; in 1987 the US had a pregnancy-related death rate of 7.2 cases per 100,000 women, that number has spiked to 18 cases per 100,000 women in 2014, according to the Health Resources and Services Administration. Cardiovascular disease, non-cardiovascular disease and infection or sepsis are among the leading causes of maternal death, the CDC reports

Learn on-demand, earn credit, find products and solutions. Get Started >>

Infant mortality rate in the US has also caused many in the health community concern, as it outpaced other affluent countries including Canada, Germany and Japan, with a rate of 5.9 deaths per 1,000 births in 2016. 

The black community has been impacted hardest by this maternal and infant health crisis. According to the CDC, the risk of pregnancy-related deaths for black women is three to four times higher than those of white women — a racial disparity present across socioeconomic lines. In 2016 black infants died at a rate of 11.4 per 1,000 births, as compared to white babies that died at a rate of 4.9 per 1,000 births. 

“On a national average we already know that black babies die at a rate three times greater than white babies,” Leslie Evans, director of the HIMSS Innovation Center, told MobiHealthNews. “And a really horrible part is that here in Cleveland, surrounded by world-class hospital systems, black babies actually die at a rate of six times higher than white babies. And it is just unacceptable.”

But some are seeing technology as a way to address these inequities and provide better care to moms and babies in the states. 

The community-based approach to innovation 

Listening to communities most impacted is key in innovation, Silas Buchanan, CEO of the consulting firm Institute for eHealth Equity, said. 

Buchanan’s mission is to use technology to benefit underserved communities, starting with his hometown of Cleveland. One of his projects is called, and uses community partners to facilitate conversations between community members and providers. 

“It is built as a social network for secular and nonsecular community-facing organizations, organizations that are embedded in communities, that I call trust brokers,” Buchanan said. “It could be a church, but it could also be a barber or a nail tech.”

Through this platform he decided to address the infant mortality rate — and in particular, the racial disparities between black and white babies — in his hometown of Cleveland. 

Instead of dumping tech solutions on potential users, Buchanan said it was important to go to the source. 

“One of the things we did first was partner with Case Western Reserve University’s Center for Reducing Health Disparities, and we did some focus groups so we could really have our fingers on the pulse on both community-facing organizations embedded in underserved communities, where infant mortality is the highest, but also [where] community health workers do the work and touch the people more intimately. We decided we would stand up on something called Battle for our Babies,” Buchanan said.

Battle for Our Babies is an initiative that spreads awareness about the problem and looks for solutions.

As part of the efforts to curb this health crisis, Buchanan teamed up with the HIMSS Innovation Center in Cleveland on the Infant Mortality Developer Challenge, which is focused on creating technologies to address infant mortality. Again, community members gave the innovators feedback on what they needed, which the innovators used to create new digital tools. 

“We left the lines of communication open for six weeks between interested developers and the leaders of community organizations so the developers could consistently be in contact with the community leaders,” Buchanan said.

Around these conversations three main topics began to emerge: helping expectant moms manage stress, encouraging dads to get involved and reducing risks with virtual conversations with healthcare providers. 

“We recognize that the leading cause of infant mortality in the black population is premature births, and premature births are tied to stress, and fathers are saying, ‘How can I support my partner and be an advocate? How do I know what signs to look for in stress? How can I sit alongside her in the doctor's office when I’m generally ignored and be an advocate for her?’” Evans said.

The winners of the challenge included a voice-activated stress management tool called SMILE; a platform that employs sports themes to help dads get involved called Tackle Fatherhood Team; and a tool called The Gabby System that connects community health workers with resources.

Innovation creating equity or inequity? 

While digital tools may be one avenue to helping moms and babies stay healthy during the prenatal and postnatal period, Buchanan said they come with their own set of challenges. 

On one hand, technology can make resources more readily available to patients. It also has the potential to exclude people, particularly those living in underserved communities that are disproportionately impacted by illness, he said. 

“If technology isn’t iterated, innovated or marketed to, or made culturally appropriate or specific, it would wind up being, through exclusion or inequity, harmful to these communities. And of course, if the converse happens it could be quite helpful,” Buchanan said. 

One example of an initiative that is angling to tackle socioeconomic inequality in health is the city of Columbus, Ohio offering on-demand rides for prenatal women. In January the city announced that it would be conducting a pilot study where low-income pregnant women would be able to call for transportation to their doctor’s office and other health-related locations using an app or website. 

Some providers are employing technology to better understand the inequities in the system, as well as why some moms and babies are more at risk than others. 

“Technology presents an opportunity to better understand and then [create solutions] for root causes of healthcare problems. This is especially important when considering differences in care and outcomes,” Dr. John Brownstein, the chief innovation officer at Boston Children’s Hospital, wrote to MobiHealthNews in an email. “HealthMap, part of the Innovation and Digital Health Accelerator, brings together disparate data sources, including online news aggregators, eyewitness reports, expert-curated discussions and validated official reports, to achieve a unified and comprehensive view of the current global state of infectious diseases and their effect on human and animal health. Online data provides an outlet to better understand disparities in access to care across all levels of economic status, race, gender, age, and geographic location in the US.”

The hidden problem 

Postpartum and perinatal depression is an often overlooked cause of maternal mortality, according to Dr. Nancy Byatt, an associate professor at the University of Massachusetts Medical School and medical director at Massachusetts Child Psychiatry Access Program (MCPAP) for Moms. 

“I think during pregnancy there is this myth that exists that pregnancy is supposed to be this wonderful time period, even though that is a complete fallacy because anybody knows who has had a baby or been around someone who had a baby it’s actually really challenging,” Byatt said. “It is a time, if anything, of vulnerability — certainly not a protective time for mental health.”

Women with a history of depression as well as teen moms are at a higher risk for experiencing depression during this period, as are women in marginalized communities, she said. 

With the shortage in mental health professionals, many women don’t have access to a psychiatrist during this period. However, most women are going to an OBGYN. Byatt said this inspired her to start thinking about ways for these specialists to help address depression.

Like Buchanan, before taking action she sought out patients and providers to hear what they needed. 

“The OB providers essentially said we need a lifeline, we need someone to call, we don’t know what we were doing, we want to help, we need some backup,” Byatt said. “And the patients said we think our OBs want to help, but they aren’t trained and they need some expertise. So we thought, what about we start this consult service so we can provide phone consultation and training and resources and referrals to build the capacity of OB providers to address depression?”

Based on this feedback and lived experiences, she and a team of clinicians founded MCPAP, a program designed to promote maternal mental health during and after pregnancy. The program enables OBs to call up a psychiatrist with concerns or questions about their patients. 

In addition to trainings and resource consultations, the team originally developed a toolkit of resources that began on paper, but has since gone digital.  

“Because people liked it so much, it inspired us to come up with a similar type of tool but for an app,” Byatt said. “So we have an app called LifeLine4Moms and it is available free in the app stores and it is something that providers can download. It kind of walks them through what do you do if someone screens positive. It has the medication treatment algorithm. It gives them tips on how to talk to patients and gives them resources for therapy, etc. ... and it’s meant for obstetrics providers.”

Looking ahead, Byatt and her team are working on an asynchronous online training tool for OBs. The tool has already gone through the first phase of testing, but in the future they plan to expand the training module to include perinatal mood and anxiety disorders. 

This isn’t the only digital health tool addressing postpartum depression (PPD). In 2017, Massachusetts General Hospital launched a free app that was designed as a PPD screening tool for new moms. The MGH Perinatal Depression Scale blends elements of the Edinburgh Postpartum Depression Scale alongside questionnaires about specific PPD-related symptoms. 

While digital tools may not be the silver bullet, they are one piece of the puzzle when it comes to addressing this issue. Maternal and infant mortality isn’t an easy problem to solve, but innovators and providers are working to make headway by talking to patients and listening to the communities most at risk. 

“Through trusted community organizations [and] technology, we can fill a gap, play a role that helps both sides. It helps community members and providers,” Buchanan said. 


The latest news in digital health delivered daily to your inbox.

Thank you for subscribing!
Error! Something went wrong!