There’s no question about the extent of racial disparities in maternal health outcomes, says Dr. Tolúwalàṣé Ajayi, pediatrician, fellowship-trained palliative care physician and lead researcher on the smartphone-based research project called PowerMom. “What’s not always clear is why those disparities exist and how best to address them.”
PowerMom invites expectant mothers to share health data
PowerMom, launched by Scripps Research Digital Trials Center, aims to identify the “why” by recruiting a large cohort of pregnant participants to share data about their health with scientists. They use a smartphone app to connect electronic health records, record biometric data such as blood pressure and weight or sync it with a wearable like a Fitbit. The app invites participants to answer brief surveys about their health every two weeks. Surveys ask about a range of pregnancy and social factors, such as changes in symptoms, whether they’ve seen a provider, had an ultrasound or changed medications, who’s supporting them during their pregnancy, whether they have access to parks or feel safe in their neighborhoods.
Participants can also join additional studies, such as one that is assessing the impact of systemic racism, or another about postpartum depression.
Pregnant mothers often not included in research
Ajayi says data from a growing cohort of diverse participants will give researchers a unique opportunity to investigate the drivers behind maternal health outcomes.
“Pregnant people have been underrepresented in research studies across the board,” says Ajayi. So far, thousands have signed up. And the demographics of participants in PowerMom have been more diverse than the pregnant population in the U.S., she says. The fact that the platform is accessible on a smartphone has made it easier to participate, she says, than in traditional brick-and-mortar-based research studies.
But Ajayi says there’s more to PowerMom than its value to researchers. The platform empowers expectant mothers.
A participant feels empowered to advocate for the best care
Kizzie Ricks is a certified nurse midwife at the Indian Health Service in Gallup, New Mexico. She joined PowerMom in her third trimester and now has a healthy six-month-old boy. Ricks says the app helped her keep vigilant about her own risk factors and assess how she was feeling during each stage of her pregnancy.
“It cued me to pay more attention to my vital trends,” she says, an important tool for a mother with conditions that could put her at higher risk for complications. She says the surveys prompted her to think through her birth plan. And she still consults the app’s other resources, such as tips about postpartum exercise and breast feeding.
Ricks wanted to join PowerMom because it helped her pay close attention to her pregnancy and postpartum health. But she also wanted to contribute to research that could help change the experiences of Black mothers in the future. She says this could help Black mothers advocate for themselves in a doctor’s office.
“Bringing this app, with a record of my experiences, to each appointment would help them believe me,” says Ricks. “I could say, ‘See this trend? You see what’s happening here?’ This could assist with having more conversations about our concerns around pregnancies.”
Research could lead to innovations in health care benefits and health care provider partnerships
What researchers uncover may also help health insurers make a difference for Black and other mothers from marginalized communities. Dr. Adam Myers is chief medical officer for the Blue Cross Blue Shield Association (BCBSA), which has been working closely with Scripps to promote diversity in biomedical research.
“As the data come in and are evaluated about what the sources of these maternal health disparities are, they could help inform our health benefit designs,” says Myers. “They could help us create innovative partnerships with health care providers.” Essentially, says Myers, understanding the complexities around what drives disparities can help insurers tailor solutions.
Myers is also an obstetrician, and, like participant Kizzie Ricks, he sees the value of a research project that both contributes to a greater understanding but also empowers individuals. “I’ve been privileged to walk with many women during their pregnancy journeys,” he says. “There’s a lot of uncertainty during pregnancy. PowerMom helps moms know what to do today to bring more certainty.” The de-identified information moms provide on surveys and through tracking their health data is shared with researchers, but it’s also theirs to keep and use to understand their own health needs.
Powering new insights, for future generations
Lead researcher Dr. Tolúwalàṣé Ajayi says her goal is to enroll tens of thousands of pregnant mothers over the next several years. She hopes researchers will use the breadth and depth of the data to do deeper dives into what causes health disparities. She hopes the studies will lead to interventions that save lives. Researchers may even be able to use the data and artificial intelligence to predict childbirth complications and alert participants to seek care. It may take a while to reach these goals, but mothers are still enrolling, many of them eager not only to track their own experiences but contribute to a better experience for the next generation.
The Blue Cross Blue Shield Association Is an Association of Independently Owned and Operated Blue Cross and Blue Shield Companies.
Powermom Is a Project of Scripps Research, a Leading Nonprofit Academic Institution with a Focus on Research and Education in the Field of Biomedical Sciences.