The Heart of Community-Based Research - MWRI and Healthy Start Forge Innovative Studies at the Speed of Trust
By: Gina Edwards
Seated inside your chest, just left of center, is the heart.
A fist-sized organ responsible for circulation, the heart sends oxygen and nutrients throughout the body and carries away unwanted carbon dioxide and waste products. In tandem with a vast network of blood vessels — a complex system over 60,000 miles long — the heart supports a continuous blood flow throughout the body that keeps us alive and healthy.
Maintaining heart health is important for everyone. But particularly for those populations with complications of the heart and cardiovascular system, including those during pregnancy, there are still unanswered questions left to investigate.
An innovative group of researchers has teamed up to explore heart health interventions during and after pregnancy, with members from Magee-Womens Research Institute (MWRI), University of Pittsburgh, and Healthy Start, a local nonprofit focused on improving maternal and child health in Allegheny County. Together, with support from the Jewish Healthcare Foundation (JHF), this interdisciplinary team is modeling how to co-design and conduct studies with the community.
Much like the heart, which functions within the greater cardiovascular system, this research takes a village — with researchers, partners, and program participants working together toward a shared goal of healthier outcomes and futures for mothers and babies.
How It Started: Heart Health 4 Moms
For Dr. Janet Catov, an epidemiologist studying pregnancy complications like hypertensive disorders of pregnancy, preterm delivery, and gestational diabetes, the cardiovascular lens offers another way to think about the causes and long-term effects of those complications.
“Women with a hypertensive disorder of pregnancy have a higher risk of heart disease later in life,” Dr. Catov explains. “So, they might present with a first heart attack or heart failure 10 years earlier than women without complications. That evidence has been clear for probably 20 years.”
Dr. Catov’s team at MWRI, which includes Dr. Esa Davis and Dr. Alisse Hauspurg, grew interested in testing interventions for women with hypertensive disorders of pregnancy to see if they could improve participants’ blood pressure profiles in the first year postpartum. To launch the Heart Health 4 Moms pilot trial, the MWRI team linked arms with Jada Shirriel, CEO of Healthy Start, and her team.
Pulling from well-established evidence indicating that self-monitoring of blood pressure coupled with a coach or support person can improve blood pressure outside of a pregnancy context, the group developed a similar intervention to pilot the concept for women during their first year postpartum. The research team co-created the studies to be culturally appropriate, responsible, and sustainable.
To Nancy Zionts, chief operating officer at JHF, the innovative nature of the project was a significant draw: “This was a real-time opportunity to educate and have an impact on the lives of women who were having babies in our community to make them healthier, to make sure they maintain their health after they delivered their baby,” she says.
An outgrowth of the pilot study, made in part due to COVID restrictions at the time, was a culturally appropriate educational video series co-developed by MWRI and Healthy Start. To Ms. Shirriel, the Heart Health 4 New Moms video series was a chance to provide broader community education that reflected the target population of Black women and highlight the various resources in Pittsburgh and Allegheny County. Local medical providers, Healthy Start participants, community partners, and members contributed to the series, which ran online and on Healthy Start’s social media channels.
“[Participants] were able to draw on their personal strengths and expertise and share some aspects of heart health that were relevant, important, or meaningful for them,” Ms. Shirriel says. “It was a way to add another kind of human context to the work that we do and do something that’s different. When people think of research, I don’t know how much we think about the enduring community education and providing resources in the community above and beyond explicitly what you ‘have to do’ as part of the research study.”
Results from the Heart Health 4 Moms trial were promising — not only did the pilot study establish the feasibility of conducting a program during the first year postpartum, but it also yielded preliminary data suggesting a modest improvement in blood pressure.
How It’s Going: Postpartum Doula Heart Health Interventions
With this initial success under their belts and thanks to the collaborative nature of their partnership, the team went on to apply for National Institutes of Health (NIH) funding to move the program into its next phase.
The timing was right: an uptick in focus on maternal and child health disparities in light of COVID brought more attention and funding to this critical period of the life course. Dr. Davis says that the increased spotlight on these disparities opened the avenues to addressing them in a cross-disciplinary format — a must for maternal-child health research, which spans multiple disciplines.
“[Our research] requires not just the medical side or the public health side, but it really involves the community side, because those community teams have been very important to help support mom and babies well before and after pregnancy, with lactation specialists, doulas, and community health workers,” she says.
MWRI, Pitt, and Healthy Start put their heads together to determine how to build out the program. As Ms. Shirriel explained the expertise and enthusiasm of postpartum doulas trained and certified at Healthy Start, the team leaned into developing a program model built upon this existing and trusted community resource.
“The evidence in the research tells us that doulas support a better birth outcome, particularly for Black women and other women who may be more subject to having adverse birth experiences and outcomes,” she says. “So, what we’re doing is taking the traditional heart and hypertensive disorders, taking the traditional ways of managing those through monitoring and clinical intervention, and coupling them with community-based interventions designed and delivered by people who are actually part of the community that we’re studying and saying, ‘Does this, in turn, improve outcomes even more?’”
The group’s NIH funding proposal, titled “Eliminating Racial Disparities in Severe Maternal Morbidity by Addressing Hypertension in the Year After Delivery” garnered a 5-year, $2.9 million R01 grant from NIH-NIMHD (National Institute on Minority Health and Health Disparities) to build out the next phase of the interventions.
In the new program model, postpartum doulas are trained in heart health, using education modules that will be administered during weekly sessions in the first eight to 12 weeks postpartum and cover topics such as physical activity, diet, sleep, smoking, stress, and mental health. Participants will track their weight, blood pressure, and physical activity using Bluetooth-enabled devices allowing the team to monitor progress over time. The doula will also facilitate a monthly group for program participants to provide peer support in making and sustaining lifestyle changes. The research team is simultaneously conducting a system evaluation to help identify structural facilitators and barriers to accessing care.
“To really tackle this problem, it involves multiple disciplines, multiple perspectives that need to be collaborating,” says Dr. Davis. “I think our project is a model of how we can bring together people of different backgrounds to be able to look at this issue from all of those angles.”
Benefits of Collaboration
The heart health initiatives from the MWRI Healthy Start partnership address critical disparities, particularly those closest to home. A 2019 Gender and Racial Equity Commission report comparing Pittsburgh to nearly 90 other U.S. cities with sizable white and Black populations found that Pittsburgh’s infant mortality rate for Black babies is over six times higher than for white babies. The report also noted that maternal mortality among Black mothers in Pittsburgh was worse than in comparable cities.
“It’s really important for us not to lose sight of this crisis of maternal morbidity and mortality and infant mortality, and that cardiovascular risk and health contributes to that,” Dr. Catov says. “There are structural contributors to these disparities. So, until we bring the voice of Black women to the table across the care spectrum, I don’t think we know how to make our systems more responsive to diverse women and their needs.”
Dr. Davis adds that community partners can provide key input for research design, given that they work with women in the communities and understand the day-to-day challenges they face. She explains that a successful community-based research initiative must engage and involve partners from the start so that the research design and interventions are appropriately crafted and can truly make an impact.
“Bring [the community] on as investigators and bring them on early on in the project,” Dr. Davis says. “Say ‘Hey, this is what we’re thinking –– help us think it through. How from your perspective, would this look? Would this work? How could this intervention be delivered? How can we really, truly partner in this?’”
Ms. Shirriel says that co-developing research with Dr. Catov and her team has influenced how Healthy Start will continue participating in research, with their role as both co-designers of studies while representing, supporting, and recruiting community members as well as training them to be interventionists.
“It really became crystal clear to me that there’s a very important place for Healthy Start and an important part for us to play in terms of making sure that we help bridge the gap between the community’s understanding of research,” she says. “Yes, research has historically done harm. There is still harm being done. It’s still not perfect, but I’m a believer that you have to get in the game. You can’t sit on the sidelines because it’s going to be done regardless of whether or not we participate. And there’s a lot at stake from the impact of the research and the results of the research.”
Demia Tyler, Healthy Start’s director of strategic initiatives, has begun to build out the organization’s infrastructure in anticipation of further growth in this area.
Best Practices in Community-Research Partnerships
As Ms. Shirriel indicates, the experience of working with the MWRI team has helped her advocate for community presence in research and bolstered expectations around working with researchers. She says that successful collaborations, like that with MWRI, require natural inquisitiveness, a willingness to learn and share power, and even slowing down the process to factor in considerations presented by the community. Apart from these components, Ms. Shirriel says that entering a long-term commitment rather than a one-off project is the ideal scenario.
“I appreciate that there has been that commitment to grow in our relationship, but also to sustain it long term because this is not going to be an overnight thing. There’s been a lot of mutual learning, and I think there’s also a lot of mutual learning and new developments to come,” she says. “It’s definitely a long game where there has to be a willingness to continue to invest in and be willing to put in the adequate level of resources to get the type of output and results that we need to see.”
For funders like the Jewish Healthcare Foundation, collaborations like this set the tone for how community-based research should be executed and create positive ripple effects.
“The fact that this is getting out of the laboratory, getting out of the literature, and even getting out of the doctor’s office, and going right into the community and educating real women — that is what we love to see. Real women will educate other real women,” Ms. Zionts says.
For Dr. Catov and the MWRI team, collaborations like this bring us closer to the overall goal of improving maternal and infant health.
“It’s really been an honor, and it’s just such an exciting opportunity to actually partner with women to help understand the whole pregnancy experience and what it can teach us about babies, health, about mom’s health,” Dr. Catov says. “The passion driving the work is really the goal of improving the health of moms and babies. That’s what we’re after.”
The MWRI-Healthy Start research team is currently recruiting pregnant and postpartum participants for the Heart Health Doula Research Study. To learn more about this research study and to see if you qualify to participate, scan the QR code.