Groundbreaking Program Launched to Engage Patients in Health Research
|To help support more patient-centered outcomes research
(PCOR), the University of Maryland,
Baltimore (UMB) and the University of
Maryland, College Park (UMCP), have partnered with eight
organization to establish the Patient-Centered Involvement
in Evaluating the Effectiveness of Treatments
Directed by C. Daniel Mullins, PhD, professor in
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
"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," says Eddington.
"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, adjunct associate professor at the University of Maryland
School of Medicine, 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
To support the University System of Maryland's The University of Maryland: 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
participates 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, the Center for 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,"
says Wicks, "the PATIENTS program will be able to reach even deeper
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
For more information on the PATIENTS program, please visit the
program's website at www.patients.umaryland.edu.
|Posting Date: 09/30/2013
|Contact Name: Malissa Carroll
|Contact Phone: 410-706-1690
|Contact Email: email@example.com