NASHVILLE, Tenn. Rev. Neely Williams. M.Div. has worked with the Patient-Centered Outcomes Research Institute (PCORI) for several years. She first served as a community investigator of the PCORI funded Mid-South Clinical Data Research Network (CDRN) phase 1. Rev. Williams worked with a national group of stakeholders, which included patients of bariatric surgery, to develop a shape a position paper to appeal to PCORI to fund research on Obesity. In response to the position paper, PCORI made the decision to allocation funding to do obesity research. The leadership of the Mid-South CDRN nominated and selected to become the Community Principal Investigator (PI) for the PCORI Bariatric Study (PBS).
In November 2017, PCORI recognized Williams’ efforts by posting an interview with her to their YouTube Channel.
“It’s about my involvement as a Co PI for the study,” she recalled. “My impressions of that experience, my overall involvement with PCORI, my past work with them over the years.”
The interview was conducted at the Annual PCORI Meeting in Washington, D.C.
New research model
In order to better serve and represent communities, PCORI instituted a new research model that included a patient/community stakeholder involved at the highest decision-making levels of their research grant proposals. Williams’ involvement began before the allocation of funding for the Bariatric Study, which is one of two obesity studies at PCORI.
After reviewing the position paper she helped write, PCORI’s Governing Board granted their request and awarded them $9 million. That funding was then divided between two studies, one for adolescents and one for adults.
“At that time, while it was all coming together, they received applications and recommendations from a pool of 16 potential patient PIs from across the country,” Williams said. “I was one of those 16, and I was selected and offered the position of co PI on the adult bariatric study.”
Bariatric Study
Williams is one of three PIs on the Bariatric Study. David Artburn serves as the Primary PI, and Kathleen McTigue serves as the Lead Scientist PI and she as the patient PI.
The study compares the one, three and five-year health benefits of three common bariatric procedures. It analyzes changes in weight, rate of remission, rate of diabetes relapse or improvements and risk of major adverse health events. Additionally, it explores patient perspectives on their key choices regarding bariatric surgery, such as whether to have surgery, which procedure is right for them and receipt of follow-up care.
It operates on a two-year funding cycle, which Williams says is a quick turnaround that doesn’t allow much time for queries. “It was purposefully put on a time crunch because PCORI needed to show that the data networks will work,” Williams explained.
Challenging and positive
Williams says the experience has been both challenging and positive. “You have to hold your own,” she said. “You’re dealing with scientists and subject matter you may not be acquainted with.”
Looking back, she believes additional training needs to be put in place for anyone hoping to work at that level. If not for her previous work on a doctoral program, she feels she would’ve been lost.
“Something like citizen sciences or other strategies out there to train community patients is needed,” she said.
Background with PCORI
Williams’ work with PCORI dates back several years. She initially became involved while working with Community Partners Integration (CPI). “I came in on the Advisory Committee to the Meharry-Vanderbilt Community Engaged Research Core (CERC),” she recalled. “And through CERC, they asked me to serve on the National Committee, and that allowed me to work with PCORI.”
Williams came aboard PCORI as it was in the middle of Phase I, building infrastructure to host big data. She served as Co-Community PI at the time, before being recommended for consideration as PI for the Bariatric Study.
Empowerment
Community advocates and patients are crucial to studies like this, Williams believes, and empowering them is the key to encouraging their involvement.
“There has to be a way of equipping them,” she explained. “Just putting people in a room with each other doesn’t create partnership. If they feel disempowered – around people with degrees and higher education – that’s not going to equalize the field.”
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.
