What drives a parent to say yes or no to enrolling their child in research? When a surprisingly high percent of patient families said no to participating in a study of brachial plexus birth injury, orthopedic surgeon Andrea Bauer, MD, and her team decided to find out why. Along the way, they became versed in how health equity and inclusion strategies can enhance research.
Earlier prognosis for brachial plexus birth injuries
The multicenter NAPTIME study looks at whether non-anesthetized MRI can help determine, earlier and with greater accuracy, whether an infant with brachial plexus birth injury will need surgery. The study could improve care for all patients, so it was surprising when a large number of families chose not to participate. Equally puzzling was the fact that parents’ cited reasons for non-participation fell along racial and ethnic lines.
Most common reasons for non-participation
- Parents of color did not want to participate in research or did not want to their child to have an MRI.
- White parents cited scheduling difficulties.
What was going on and was it possible to turn the tide? For answers, Dr. Bauer reached out to Valerie Ward, MD, MPH, Boston Children’s chief equity and inclusion officer. “Our patients are diverse racially, ethnically, and economically,” says Dr. Bauer. “It was important that the patients enrolling in the study match the population we treat.”
Through a collaboration with the Office of Health Equity and Inclusion, the brachial plexus research team made simple modifications that successfully attracted a more diverse patient population. Further, enrollment improved across the board.
“When we changed our recruitment methods, we found more subjects from every subset of our patient population willing to enroll,” says Dr. Bauer.
Zeroing in on blind spots in patient recruitment
To improve enrollment, Dr. Ward’s team of health equity experts looked at every aspect of recruitment: from study materials to the way the clinical research coordinator interacted with patient families. From their analysis of the recruitment process, they identified several issues that could discourage diverse families from agreeing to participate. They then worked with the brachial plexus research team to make simple modifications.
Issue: Parents didn’t want to participate in medical research.
Modifications: The clinical research coordinator was coached in non-verbal cues that can build trust, including eye contact, smiling, and sitting down with families instead of standing whenever possible.
Issue: Complex medical jargon was off-putting for many families.
Modifications: To make information about the study more accessible, the team used plain language guidelines to revise the study materials. They also added a statement describing how participating in the study could help other patients.
Issue: Parents were concerned that MRI was not safe for babies.
Modification: Dr. Bauer’s team added a description of non-anesthetized MRI and why it was safe for babies to their study materials.
Issue: Babies pictured in the recruitment brochure were not diverse.
Modifications: The study brochure was redesigned to feature photos of diverse babies, increasing the likelihood that parents would see children who look like their own. To appeal to a multilingual audience, the study materials were translated into Spanish.
Issue: Transportation costs were prohibitive for lower-income families.
Modification: Instead of parking reimbursement, which favors families who own cars, parents receive a single cash payment to cover transportation, no matter how they get to the hospital.
Results: Health equity and inclusion strategies improved recruitment overall
By modifying their recruitment efforts to be more inclusive, the researchers were able to recruit more patients across the full spectrum of their patient population.
- Before the health equity intervention, 54 percent of diverse families and 35 percent of white families agreed to participate in the study.
- After implementing the recommended strategies, 68 percent of diverse families and 71 percent of white families enrolled in the study.
“The learning is that health equity is everybody’s work,” explains Dr. Ward. “When you break down barriers in pediatric health care, children of all races and ethnicities benefit.”
Going global with health equity and inclusion
Soon after these findings were published in the August 2021 issue of JPOSNA, Boston Children’s launched the Sandra L. Fenwick Institute for Pediatric Health Equity and Inclusion.
While the Office of Health Equity and Inclusion focuses on health equity initiatives within Boston Children’s, the newly created Fenwick Institute works to promote health equity across the nation and around the globe.
“Boston Children’s Hospital is a leader in identifying and eliminating childhood health disparities,” says Dr. Ward, who was named the first Sandra Labas Fenwick Family Chair in Equity and Inclusion. “As we continue our work at Boston Children’s, we will be sharing our results broadly so our colleagues at other medical centers, hospitals, and institutes can apply them as well.”
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