The University of Maryland BioPark was buzzing with excitement as the Patient-Centered Involvement in Evaluating the Effectiveness of Treatments (PATIENTS) Program welcomed nearly 200 community members, patients, researchers, and trainees to its third PATIENTS Day, held on May 31. An afternoon filled with informative panel discussions as well as an interactive health fair, PATIENTS Day aimed to bring together attendees from diverse backgrounds to learn from each other about the most important health care concerns in the community and improve the way research is conducted and understood by researchers and communities alike.
“Patient-centeredness means putting patients at the heart of all we do in health care research and health care delivery,” said Natalie D. Eddington, PhD, FCP, FAAPS, dean and professor of the University of Maryland School of Pharmacy (UMSOP), of which the Patients Program is a part. “Since its inception in 2013, the PATIENTS Program has become a national leader in this field. The patients who have served as advisors on studies supported by The PATIENTS Program have helped researchers reframe their research questions from very technical language to language that resonates with real people and real situations, improving the quality of those studies.”
"We must listen to the residents of West Baltimore, and bridge the gap between the health needs of patients and the ability of our campus to work with local residents to meet those needs,” added C. Daniel Mullins, PhD, professor and chair of the Department of Pharmaceutical Health Services Research at UMSOP and executive director of the PATIENTS Program. “Together, we can deliver solutions to the most challenging health problems that West Baltimore faces. The University of Maryland is here to listen, to bridge, and to work in authentic partnership with the West Baltimore community to deliver solutions.”
After opening remarks representing patient and community voices, as well as University leadership, including Jay A. Perman, MD, president of the University of Maryland, Baltimore (UMB), and Eddington, the event kicked off with an engaging panel discussion. It was titled “Learning from our ‘PATIENTS Professors.’ ” The panel featured patient advisors Del Price and Dwyan Monroe speaking about their experience working with the PATIENTS Program as well as an interactive activity designed to help attendees understand the different methods researchers can use to engage community members in the research process.
“I have been happy to be a part of the PATIENTS Program for the past six years,” Price said. “I love and respect that this program comes from the School of Pharmacy. When we look at where the next health care revolution is going to take place — it is going to come out of alliances like those forged by the School of Pharmacy and the PATIENTS Program with other organizations and institutions already present in the community.”
Two additional panel discussions rounded out the event. “PATIENT Pioneers, PATIENT Professors” focused on patients who were invited to author or contribute to publications based on their experiences participating in research or receiving health care, while “Healthy Neighborhoods vs. Food Deserts and Food Swamps” addressed critical issues surrounding access to healthier food options in West Baltimore. The latter addressed how businesses can thrive and serve as an anchor to the community and a celebration of individuals and groups who are overcoming obstacles to provide fresh fruits and vegetables to the community.
One speaker told of his experience participating in and co-authoring an upcoming publication about the Pragmatic Randomized Trial Evaluating Pre-Operative Alcohol Skin Solutions in Fractured Extremities (PREPARE) with M. Gerard-Paul Slobogean, MD, MPH, FRCSC, associate professor of orthopedics and assistant director of clinical research at the University of Maryland School of Medicine. Patient advisor Jeff Wells remarked, “I was involved in this study for some time before I found out that it did not really represent the way science traditionally has been done – the way that the researchers treated me, the fact that I did not just sit at the table, but was listened to. The researchers heard what we said; they paid attention. They treated me the way patients who participate in research should be treated.”
PATIENTS Day also included a health fair staffed by vendors who provided important health and wellness resources to attendees as well as a range of free health screenings for conditions such as high blood pressure.
Initially funded with a $5 million grant from the Agency for Healthcare Research and Quality, the PATIENTS Program partners with patients and health care providers to answer questions about the best treatment options to improve health and quality of life. The program engages people from all communities, especially individuals from underserved and minority populations, in every step of the patient-centered outcomes research process.