Jessica Kramer presents at PCORI Science Fair on Capitol Hill

By Jill Pease

Jessica Kramer, Ph.D., OTR/L, an associate professor in the University of Florida College of Public Health and Health Professions department of occupational therapy, was invited to discuss her research on mental health service delivery for young adults with intellectual and developmental disabilities at the first Patient-Centered Outcomes Research Institute, or PCORI, Science Fair on Capitol Hill, held October 3 in Washington, D.C.

Jessica Kramer, Destiny Watkins and Joan Beasley
Dr. Jessica Kramer, Destiny Watkins and Dr. Joan Beasley presented on their study of mental health service delivery for young adults with intellectual and developmental disabilities.

The small poster session-style event for members of Congress and their staff was designed to raise awareness of PCORI and the studies the organization funds in order to help inform legislators’ policy decisions related to patient-centered care.

Kramer and her colleagues Joan B. Beasley, Ph.D., LMHC, a research professor at the University of New Hampshire and principal investigator, and community partner Destiny Watkins, shared information on their PCORI-funded study examining health outcomes for telehealth delivery of Systemic, Therapeutic, Assessment, Resources, and Treatment, or START, a national evidence-based model of community based mental health crisis prevention and intervention services for people with intellectual and development disabilities.

Like many other health practices, START providers began offering telehealth services in response to COVID-19, and there has been preliminary evidence that telehealth provides some benefits, including decreased travel times for providers and greater flexibility for family members to participate. The research team, which also includes partners at Kennedy Krieger Institute at Johns Hopkins University and Georgetown University, is now examining whether or not telehealth offers the same outcomes as in-person START.

“Several of the congressional staffers and policymakers we spoke to shared that they had been asked to visit our table because of our focus on telehealth,” Kramer said. “It’s very clear that legislators and their staff recognize the important role of telehealth in the future of our health care system.”

group photo on Capitol Hill steps
Science Fair researchers and PCORI staff pose in front of Capitol Hill

Science fair attendees were also interested in a service experiences self-report measure Kramer and colleagues are developing as part of the study in order to capture the perspectives and experiences of young people with intellectual and developmental disabilities.

“People were really excited to hear that we are not only measuring these objective outcomes, but we’re measuring people’s experiences with their care,” Kramer said. “We had requests from people to share the tool when it is ready. It was gratifying to know that many people want tools to include the voices of people with intellectual disabilities. Oftentimes there’s a lot of stigma and the assumption that people with intellectual disabilities can’t share their experiences or aren’t meaningful reporters. It was nice to see that other people also value their perspectives.”

PCORI is always looking for new ways to connect lawmakers with the important work the organization funds, said Liz Westbrook, PCORI’s director of public policy and government relations.

“There is nothing more valuable than getting to hear directly from researchers and patients themselves,” Westbook said. “We were thrilled with the turnout and energy around the event — it drew a great range of bipartisan, bicameral participation from congressional staff as well as other health policy professionals. We were able to showcase a broad array of studies and projects from different corners of the country and had positive feedback from many attendees that the fair was valuable and enlightening.”