Vanderbilt to House PCORnet Engagement Coordinating Center

Vanderbilt University Medical Center has received a three-year, $2 million contract from PCORI, the Patient-Centered Outcomes Research Institute, to establish an Engagement Coordinating Center for PCORnet, the National Patient-Centered Clinical Research Network.

The new center will be directed by Karen Winkfield, M.D., Ph.D., professor of radiation oncology, Ingram Professor of Cancer Research and executive director of the Meharry-Vanderbilt Alliance.

PCORI is an independent nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research to help consumers, clinicians, payers and policymakers make better-informed healthcare decisions at both the individual and population levels. PCORnet, established by PCORI in 2013, is a partnership among large clinical research networks, currently having data on everyday healthcare encounters of more than 68 million people across the U.S.

Winkfield is a national expert in community engagement, with research focused on the design and implementation of programming to reduce sociocultural and economic barriers that contribute to health outcome disparities. Before joining VUMC in 2020, she was a faculty member at Wake Forest University, serving as associate director for community outreach and engagement and as director of the Office of Cancer Health Equity. Prior to that, Winkfield was a radiation oncologist at Massachusetts General Hospital Cancer Center in Boston, specializing in radiation therapy for hematologic malignancies and breast cancer.

“PCORnet is above all a people-centered research network, and the patient populations it engages reflect the human diversity that defines our country and its health care system,” Winkfield said in a statement. “With regard to broad stakeholder engagement in comparative effectiveness research, we look forward to helping PCORnet build on its history of innovation and success. The tremendous health care data research capabilities found here at VUMC, along with our growing portfolio of comparative effectiveness research and pragmatic clinical trials, is likely to have figured in PCORI’s decision to place national leadership for stakeholder engagement efforts with our team.”

Among the clinical research networks that have partnered to form PCORnet is the Stakeholder, Technology and Research Clinical Research Network, or StarCRN, encompassing VUMC and seven other health systems, with combined data on over 15 million patients. StarCRN is led by network principal investigator Russell Rothman, M.D., M.P.P., director of the Vanderbilt Institute for Medicine and Public Health and Senior Vice President for Population and Public Health at VUMC.

The PCORnet Engagement Coordinating Center (PECC) will oversee activities at the national level and help run activities across PCORnet sites. It will aid in the development of strong policies for PCORnet that move the role of stakeholders forward in all PCORnet activities. The PECC will be led by and engage a diverse range of individuals that represent racial, ethnic, gender, geographic, and other forms of diversity and represents a dynamic group of stakeholders impacted by patient-centered research including families and patients, community groups, local and federal government agencies, clinicians, health systems, and payers.

The PECC team has significant experience in leading stakeholder engagement activities for various PCORnet national studies such as 1) a recent data-focused PCORnet study on the impact of different surgeries for weight loss, 2) a real-world clinical trial (ADAPTABLE) that evaluated the best dose of aspirin for patients with heart disease, and 3) current work on a trial (PREVENTABLE) testing the role of cholesterol-lowering drugs to prevent dementia.

The PECC will ensure that all PCORnet projects follow the PCORI Engagement Rubric (a PCORI guide for engagement practices), PCORnet core values, and the standards of the PCORnet Engagement Work Group. It will also directly partner with the PCORnet Engagement Work Group to oversee plans and approaches related to engagement.

The PECC’s goals are to create the structure to support true engagement of patients, families, clinicians, health systems, and other stakeholders in all parts of PCORnet research and to grow research that respects stakeholders’ views on the meaning and acceptability of research. This includes making sure that stakeholders are engaged in identifying research topics, have opportunities to lead and provide input to research projects, and are involved in the decision making on projects. The center’s approach is guided by a stakeholder engagement model that recognizes that stakeholders can provide varying levels of input to guide work and inform research projects. This includes:

Having stakeholders involved in leadership and partnership roles on PCORnet decision-making bodies
Development of PCORnet policies that support principals of engagement
Having stakeholders participate as co-principal investigators or co-investigators on projects
Having processes and support directly engaging stakeholders for input on PCORnet research projects
Sharing best practices and trainings across PCORnet and with stakeholders to better the stakeholder engagement process
Engaging patients, communities, health systems, and other stakeholders to support sharing of findings using scientific or plain language, depending on the audience
Assessing the impact of stakeholder engagement