NASHVILLE, Tenn. Neely Williams, MDiv, an ambassador for the Patient-Centered Outcomes Research Institute (PCORI), described her work as a Patient Partner Researcher during PCORI’s Ambassador Coffee Break on June 25, 2020. She described her efforts with the HEROS Study, the Meharry-Vanderbilt Community Engaged Research Core and the PCORnet Bariatric Study.
“I’m a patient/non-scientist/researcher,” she said, introducing herself at the outset. “I’m a minister. I’m a widow. I’m a mother, a grandmother and a great grandmother.”
She added, “It is a pivotal time and a pivotal place to be in, and I’m grateful to be here.”
The HEROS Study
As a member of the Stakeholder Engagement Team for Star CRN, Neely said she discusses how partnerships play out in medical research, working to ensure that information and resources are available. One such resource, she noted, was the Human Epidemiology and Response to SARS-CoV-2 (HEROS) Study.
“The HEROS Study is one of the greatest use cases when talking about doing engagement and research in such a pivotal time,” Neely commented. “It’s phenomenal how fast these pieces are moving together.”
The HEROS Study aims to determine how common coronavirus infection is, how it spreads and how common it is to have an infection without symptoms. Neely’s role, as she described it, was to “hold the line” and ensure that patients are effectively engaged.
PCORnet Bariatric Study
Williams also served as a Patient Representative for the PCORnet Bariatric Study, specifically as a member of the PCORnet Obesity Task Force, in 2014. The study looked at the three most commonly used weight procedures in the United States: lap band, gastric bypass and sleeve gastrectomy.
Neely’s role was as an advocate for patients and their families. Patients’ voices, she said, need to be heard at every level.
“We need to make sure patients hold their ground as experts,” she noted. “Our expertise is our lived experience.”
‘I get more than I bring’
She stressed how grateful she was to be a part of these medical research projects. Although she brings her own experiences and expertise to every meeting, she feels she takes more away from the discussions and efforts than she brought.
“I always get more than I bring,” she said. “I always learn from everybody at the table.”
About the Meharry-Vanderbilt Alliance
Founded in 1999, the Alliance bridges the institutions of Meharry Medical College and Vanderbilt University Medical Center. Its mission is to enrich learning and advance clinical research in three primary areas -- community engagement, interprofessional education and research -- by developing and supporting mutually beneficial partnerships between Meharry Medical College, Vanderbilt University Medical Center and the communities they serve. Through community engagement, the Alliance serves a large community of stakeholders including surrounding universities and colleges, community organizations, faith-based outlets and community health centers. Its interprofessional education enhances students' interdisciplinary understanding and improves patient outcomes through integrated care. The research conducted provides access to experienced grant writers and materials supporting the grant application process and facilitates grant-writing workshops.