SOP Launches Groundbreaking Program to Engage Patients in Health Research

New program emphasizes patient-centered outcomes research to build and sustain relationships among patients, providers, and researchers.

By Malissa Carroll
September 30, 2013

To help support more patient-centered outcomes research (PCOR), the University of Maryland, Baltimore and the University of Maryland, College Park, have partnered with eight stakeholder organization to establish the Patient-Centered Involvement in Evaluating the Effectiveness of Treatments (PATIENTS) program. Directed by C. Daniel Mullins, PhD, professor in the Department of Pharmaceutical Health Services Research at the University of Maryland School of Pharmacy, the program aims to reduce health disparities by leveraging relationships with patient communities and health care systems to ensure that patients, health care providers, and other partners are actively engaged in research.

“The University of Maryland has long been a supporter of interdisciplinary research and patient care,” says Natalie D. Eddington, PhD, FAAPS, FCP, dean and professor of the School of Pharmacy. “Our newly established PATIENTS program will take the best of the University of Maryland and the best of our local health care systems to create a protocol for excellent health care that we hope will be modeled in other states across the country.”

“The premise for the PATIENTS program is straightforward,” adds Mullins. “We know that when patients are engaged in the research design process, the results that emerge from that research will be more meaningful to them. We want to encourage researchers to embrace the value and central role that patients and other stakeholders can and should play in research – not only as participants, but also as co-developers of that research.”

Initially funded by a five-year, $5 million grant from the Agency for Healthcare Research & Quality (AHRQ), the PATIENTS program aims to foster sustainable partnerships with local, regional, and national communities of diverse patients and health care systems. Researchers participating in the program will work with those patients and health care systems to conduct PCOR and develop novel ways to publicize research results to patient communities.

“The PATIENTS program represents a unique opportunity to engage patients in a very meaningful and sustainable way,” says Patricia Deverka, MD, MS, MBE, senior research director at the Center for Medical Technology Policy and a member of the PATIENTS program’s internal steering committee. “It brings together a diverse group of organizations, and I think that all of us are very excited to get to know each other and to look for new opportunities to collaborate.”

To support the University System of Maryland’s “MPowering the State” initiative, each professional school at the University of Maryland, Baltimore, including the Schools of Pharmacy, Medicine, Nursing, Social Work, Dentistry, and Law, as well as the School of Public Health at the University of Maryland, College Park, actively participate in the PATIENTS program. Eight external organizations also partner with the program to help engage patients in research, and are represented on the internal steering committee, including the Association of Black Cardiologists, Bon Secours Baltimore Health System, Center for the Medical Technology Policy, Mt. Lebanon Baptist Church, PatientsLikeMe, Riverside Health System, the University of Maryland Medical Center, and Westat.

“Through the PATIENTS program, we will have an opportunity to focus on diverse patient populations in a number of settings that were previously hard to reach, including rural settings,” says Terris Kennedy, RN, PhD, senior vice president and chief nursing officer for the Virginia-based Riverside Health System, and member of the PATIENTS program’s internal steering committee. “We hope the results produced through this program will enhance our ability to deliver services in a very resource-efficient and effective way, while meeting the needs of this very diverse population in terms of health care delivery and health care services.”

Samuel L. Ross, MD, MS, chief executive officer for Bon Secours Baltimore Health System and member of the PATIENTS program’s internal steering committee, continues, “The PATIENTS program represents a great opportunity to enhance PCOR conducted between Bon Secours Baltimore Health System and the University of Maryland. We are pleased to partner with the University, as well as the program’s other stakeholders, on important patient-centered projects that align with the mission of our organization to grow our health system and promote quality, compassionate health care for those in need.”

Researchers in the PATIENTS program will work with stakeholders to identify and meet the needs of patients’ communities. Studies will focus on the outcomes that matter most to patients and their caregivers, accounting for preferences of decision makers, availability of services, and other stakeholder concerns. Involvement with patients and their communities will be sustained even after individual research projects end.

“In my opinion, PCOR helps to improve the management of chronic disease because it focuses on ensuring that the patient, his or her community, and lifestyle are brought into focus in the treatment relationship,” says Cynthia Chauhan, a cancer patient, patient advocate, and external advisory board member for the PATIENTS program. “I believe that the treatment process becomes a very individualized experience where the clinicians and researchers are actively engaged with the patient.”

One of the program’s partners, PatientsLikeMe, is an online patient network with more than 200,000 members that helps people track and share their experience with disease, connect with others like them, and contribute health data to advance medicine. Paul Wicks, director of research and development for PatientsLikeMe and member of the PATIENTS program’s internal steering committee, says that his organization is looking forward to adding a high-tech component to the University’s high-touch approach to research. “By partnering with PatientsLikeMe, the PATIENTS program will be able to reach even deeper into communities to ensure everyone’s voice is heard.”

To mark the official launch of the program, members of the program’s internal steering committee gathered at the School of Pharmacy to discuss goals for the program and set expectations for the next five years. Jay A. Perman, MD, president of the University of Maryland, Baltimore, was also in attendance to express his support for the program.

“As a physician, I believe that patient-centered care is critical for the public health of the nation,” says Perman. “The PATIENTS program will provide guidance about how to design future PCOR studies to ensure that they are maximally informative for patient decision making, as well as provide insight into how patients make decisions, helping us to improve that process and aid physicians and other health care providers who communicate with patients during their decision-making process.”

For more information on the PATIENTS program, please visit the program’s website at www.patients.umaryland.edu.

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