Epic tools can increase racial/ethnic diversity in clinical research
Recruiting participants into clinical research studies is one of the biggest challenges investigators face. Engaging underrepresented groups, particularly people of color and those in lower socioeconomic communities, can be especially difficult, given historical distrust of the medical system. However, achieving a truly representative sample is key to ensuring that research findings have the broadest application and generate clinical products that are relevant to all.
My lab has been evaluating the efficacy of Epic’s tools to connect with eligible patients to increase diversity within the national SPARK study for autism. At first, our goal was to broaden the reach of our research team across Texas Children’s Hospital. To do this, we developed Texas Children’s first-ever research-focused Best Practice Advisory (BPA), which alerts providers when their patients may be eligible for SPARK and encourages them to share study information.
During the first year following the BPA’s launch, we saw a seven-fold increase in the number of provider referrals to the study and a four-fold increase in the number of participant registrations. Surprisingly, we also observed a significantly higher proportion of families of color enrolling in the study and returning salivary DNA samples (an important aspect of SPARK participation) when they learned about the study via the BPA compared to other ways (e.g., social media).
This latter finding led us to question whether we might be even more successful if we placed the BPA in pediatric practices that served a high number of children with autism in marginalized communities. After launching it in five Texas Children’s Pediatrics sites, we saw a higher proportion of families of color in primary care versus specialty care showing interest in the study. Unfortunately, the COVID pandemic interfered with further examination of enrollment rates; nevertheless, we demonstrated the success of the BPA in engaging underrepresented groups and increasing awareness of study opportunities.
Recently, we’ve been tracking the success of another tool – MyChart – in recruiting families to SPARK. Our two-year surveillance of MyChart outreach: (1) showed it to be as effective as the BPA in terms of the proportions of families enrolling in the study and returning DNA and (2) preserved racial/ethnic representation from the sampling pool to the enrolled sample. This is an important finding, as MyChart is more feasible than the BPA and can support recruitment efforts for many studies simultaneously within the same hospital system.
The BPA and MyChart have been instrumental in helping us connect with our diverse patient population by leveraging patient-provider relationships and secure communication platforms—strategies that engender trust among underrepresented groups. These methods further encourage equitable and unbiased communication of study opportunities in that all potentially eligible patients can receive the information. Hospitals and related organizations should encourage Epic-based recruitment strategies for all clinical investigations and provide the necessary infrastructure to support these endeavors. They should further educate providers about the importance of diversity in clinical research and emphasize their valuable role in sharing study opportunities with their patients.
Learn more about Dr. Robin Kochel’s work by visiting her lab page and following her lab on Facebook.
By Dr. Robin P. Goin-Kochel, associate professor, Division of Psychology, Department of Pediatrics and co-director, neurobehavioral core, Baylor College of Medicine, director of research, Autism Program, Meyer Center for Developmental Pediatrics & Autism, Texas Children’s Hospital Kochel Lab for Clinical Autism Research
