Members of the program’s internal and external steering committees gather at the School of Pharmacy to discuss progress, share experiences, and begin shaping the next phase of this groundbreaking initiative.

By: Malissa Carroll
Wednesday, October 29, 2014

In September, the program – a partnership between the University of Maryland, Baltimore (UMB); the University of Maryland, College Park; and eight stakeholder organizations – celebrated the one-year anniversary of its launch in 2013. To evaluate the program’s success over the last year and outline the steps needed to achieve future goals, more than 30 members of the program’s internal and external steering committees gathered at the University of Maryland School of Pharmacy in April 2014 to share lessons learned from their participation in this groundbreaking initiative.

“The goal of the PATIENTS program’s first year was to help members of our internal and external steering committees get to know each other and learn to work together,” said C. Daniel Mullins, PhD, professor and chair of the Department of Pharmaceutical Health Services Research (PHSR) at the School of Pharmacy and principal investigator for the PATIENTS program. “Together, we are transforming the way researchers conduct patient-centered outcomes research (PCOR). However, we understand that partnerships begin by learning about what our partners need. We are committed to identifying the needs of our community partners and remaining involved with those partners and their communities when the research ends.”

The PATIENTS program empowers patients to propose questions about their health care concerns and actively participate in studies to answer them. It is designed 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.

To demonstrate the value of PCOR -- research that engages patients and caregivers as both participants and advisors -- Mullins invited Daniel Frye, JD, executive director of the New Jersey Commission for the Blind and Visually Impaired and member of the PATIENTS program’s external steering committee, to kick off the meeting. As a blind patient, Frye shared his thoughts about what researchers must remember as they conduct PCOR.

“There is nothing universal about the experience of treating a blind or visually impaired patient,” said Frye. “You’re going to find people at different stages of emotional development, and it’s important that you respond to them just as you would respond to any other patient. Meet people where they are, use common sense, and assume that there’s nothing inherent in blindness or visual impairment that makes your patient unusual or unconventional. Our medical needs will be best met when you simply regard blindness as one of many characteristics of our whole.”

Following Frye’s remarks, Natalie D. Eddington, PhD, FCP, FAAPS, dean and professor of the School of Pharmacy and executive director of University regional partnerships, and Bruce Jarrell, MD, chief academic and research officer and senior vice president for UMB, addressed the audience, committing continued support from the School and University to the program.

“The University has made a commitment to engaging and aligning its goals with those of local communities, and that work begins here,” said Eddington. “As a health professions university, it is our responsibility to ensure that the gaps in the country’s current health care system do not persist for future generations. The School of Pharmacy is committed to ensuring that the PATIENTS program becomes part of our infrastructure, and I thank you for your commitment to this initiative. I cannot wait to see the accomplishments that you achieve together.”

Jarrell added, “Members of the University’s leadership recognize that UMB is part of the community, and that we must learn how to interact with and support those programs and services from which other individuals in the community benefit. The PATIENTS program is the embodiment of this spirit, leveraging our expertise in the areas of health and social services to improve the health and lives of people living in the community.”

The meeting’s early discussions focused on outlining priorities for the coming year. Jennifer Huang, PhD, senior director at Westat, presented findings from a needs assessment completed by members of the program’s internal steering committee. “The goal of the needs assessment is to make sure that the PATIENTS program continues to progress, and that it employs a bi-directional learning process, ensuring that your needs are heard and that the program is responsive,” she said.

In addition, while the program is currently funded by a five-year, $5 million grant from the Agency for Healthcare Research & Quality (AHRQ), members of the internal and external steering committees also brainstormed ways in which the program could sustain itself after the grant concludes.

“The PATIENTS program is one of the most prestigious grants that AHRQ awarded in 2013, and we are very grateful for this funding,” said Mullins. “However, we must recognize that this program represents more than a grant. It represents a commitment from our internal and external steering committee members to making a difference -- to listening to the voice of the patient. It is not about five years. Instead, it is about using these five years to make us sustainable for many years to come.”

Magaly Rodriguez de Bittner, PharmD, BCPS, CDE, FAPhA, professor and chair of the Department of Pharmacy Practice and Science (PPS) at the School of Pharmacy, added, “Patients are at the core of all that we do as health care professionals, and many institutions are looking for new ways to engage patients and their caregivers. By partnering with these institutions, transforming how researchers approach patient communities, and serving as a resource to help health systems better engage patients, the PATIENTS program will be able to sustain itself for many years to come.”

Other discussions focused on the program’s training and education opportunities, stakeholder engagement, and cultural competency. Researchers Robin Newhouse, PhD, RN, NEA-BC, FAAN, professor and chair of the Department of Organizational Systems and Adult Health at the University of Maryland School of Nursing; Jie Chen, PhD, assistant professor in the Department of Health Services Administration at the University of Maryland School of Public Health; Susan dosReis, BSPharm, PhD, associate professor in PHSR; and Ebere Onukwugha, MS, PhD, assistant professor in PHSR, also provided updates on their PCOR studies, which are supported through the PATIENTS program.

“It’s striking to see the diversity of stakeholders at today’s meeting, including some with senior decision making roles in major health care organizations, as well as patients, researchers, and representatives from community organizations,” said Ethan Basch, MD, MSc, associate professor of medicine and public health and director of the Cancer Outcomes Research Program at the University of North Carolina-Chapel Hill and member of the PATIENTS program’s internal steering committee. “The PATIENTS program is a striking example of the success that can result from bringing multiple stakeholders together who are invested not only affecting change within their own organizations, but in constructing models that can be used by other institutions across the country and beyond.”

The meeting concluded with a discussion about lessons learned by internal and external steering committee members during the program’s first year and suggestions for actions that will ensure the program meets its goals for the second year.

“This program represents how we as health care professionals should be caring for patients and their communities,” said Samuel L. Ross, MD, MS, chief executive officer for Bon Secours Baltimore Health System and member of the PATIENTS program’s internal steering committee. “At Bon Secours, we are committed to making a difference in health outcomes in the communities that we serve, but to do that, we have to involve and engage the patients and their primary caregivers. Only by making our patients partners in this process -- understanding and inspiring them to become advocates for their health -- will we achieve the outcomes that we desire.”