Advancing medical innovation for real world populations

The ADAPT team at NC TraCS can help researchers make their science generalizable and marketable to more patients.

Dana McCarty meets people in some of the most stressful few months of their lives. McCarty is an assistant professor in the UNC School of Medicine and a physical therapist in the Newborn Critical Care Center at UNC Children's, focusing much of her work on newborns—specifically, babies born extremely preterm. For parents of those babies, the first few months after the baby is born are a stressful, complex, and frightening time spent in and out of the hospital, meeting with countless specialists, and hoping that their child will be healthy.

"I've heard parents describe their time in the NICU as a complete blur," McCarty says.

But amid this blur, these parents need to become diligent students of neonatal medicine and learn how to care for a baby with unique challenges. So, a few years ago, McCarty put together some booklets to help parents navigate this process. The booklets had information on a baby's development, guides to an infant's body language, definitions of terms they might hear in the NICU, and therapeutic strategies to help the babies grow healthy and strong.

These booklets could be a vital resource for these parents—and to ensure that all families in the NICU had access to high quality, culturally appropriate written materials necessary for full participation in clinical care and research opportunities, McCarty turned to the Assessment, Design, and Analysis for Population validiTy (ADAPT) team at the North Carolina Translational and Clinical Sciences (NC TraCS) Institute.

ADAPT offers researchers an impressive range of design, implementation, analysis, and community engagement resources to enhance the generalizability of health solutions for real world clinic populations. By working with ADAPT, researchers can discover new avenues for scientific insight and, most importantly, ensure that research, therapies, and interventions will benefit the health of all North Carolinians.

"We want to reduce those lost opportunities when clinical advances aren't relevant or effective for many of the people who need them," says Jubilo Tommy White, ADAPT's program manager. "It's a win-win for investigators—incorporating multilingual and demographically responsive research methods increases their studies' rigor and credibility, while also expanding the impact and market reach of discoveries."

White, along with Lupe Straus, ADAPT's research project manager, can help researchers with a variety of support services such as demographic assessment and planning for multilingual study participation, or even directly conducting multilingual qualitative data collection and analysis for focus groups, semi-structured interviews, and story circles. White and Straus regularly consult with researchers at all stages in the research process to help them figure out how the ADAPT team can grow the impact of their work.

For example, when McCarty was translating her booklets from English to Spanish, she initially had two graduate students work on a Spanish translation of the material, which they followed up with a professional translation service. But McCarty and her team wanted confirmation that the initial translations made sense, and conveyed all the nuances of the detailed physical therapy instructions and other information that parents need.

For this, the ADAPT team facilitated live materials review sessions with ADAPT's Multilingual Community Review Board (MCRB), an advisory group of natively multilingual North Carolinians who collaborate with study teams to inform study design and improve study materials for multilingual markets and patient populations. This board can provide researchers with invaluable feedback on their work, such as how to make websites and educational videos more culturally relevant, or ensure that Spanish language terminology and phrasing are more universally understandable to Spanish-speakers with different dialects and backgrounds.

By facilitating focused group discussions of the booklets' context among members of the MCRB—many of whom are parents who have personally experienced the joys and challenges of raising an infant—ADAPT was able to provide McCarty with detailed feedback and revisions to improve word choice and tone for Spanish-speakers of various reading levels and regional dialects. This process also helped McCarty and her team effectively describe physical movements and developmental statuses that did not have direct, commonly used Spanish-language counterparts and retain English language acronyms that would confer useful recognition in the clinical care setting.

Constancita "Tita" Nieves, a member of the MCRB, points out that the board can offer meaningful and impactful insight that could otherwise be missed through basic translation—noting, for example, that words can have a variety of meanings—and highlight where research can be more impactful. Greizy Beckles-Araque, an MCRB member since 2018, says she's able to bring in the perspective of working with local families. Through this kind of insight, researchers and clinicians can understand better how to connect their science and healthcare to patients.

"When target communities aren't meaningfully engaged, even team members who identify with that community can unintentionally miss perspectives that are essential for designing effective interventions."

The MCRB can also help pinpoint ways to improve research programs or medical interventions. "When target communities aren't meaningfully engaged, even team members who identify with that community can unintentionally miss perspectives that are essential for designing effective interventions," Straus says.

The ADAPT team can help facilitate that process. Early Check, for example, is a voluntary genomic newborn screening program that aims to support the health of newborns and families in North Carolina. Early Check uses DNA sequencing to identify serious health conditions that may benefit from early treatment. By participating in the Early Check program, parents can also help researchers understand and study genetic conditions in babies and inform newborn screening public health policy.

The Early Check study team contracted ADAPT to provide MCRB recommendations to improve study materials and recruitment methods for Spanish-speaking Latine parents. ADAPT collaborated with the Early Check study team to facilitate three Spanish-language review sessions with the MCRB, each of which generated detailed and actionable recommendations for the study team to consider.

The sessions focused on recruitment methods and materials to engage Spanish-speaking Latine parents, study results reports, and content for the consent. Parents provided input on the Spanish-language translation of the study materials, noting areas needing clarity and recommending placement of information to ensure comprehension. Input from the MCRB helped the Early Check team revise study materials to increase participant understanding.

This kind of process can be invaluable to researchers attempting to answer all kinds of medical questions. But the ultimate beneficiaries of the ADAPT team's expertise are North Carolinians like the parents McCarty supports.

"In the NICU, especially, or anytime you're in a hospital setting, and you or a family member have a medical condition or a crisis, you're consuming a lot of information at once," McCarty says. "There are going to be a lot of people that come by to teach you things, show you things, help you understand things."

"It's really important for families to have information that they can go back to help reinforce what they've heard, what they've learned."

To collaborate with ADAPT or learn more about ADAPT's services, request a free consultation.