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University of Maryland, Baltimore
Partnering with PATIENTS
Medical studies in the U.S. are influenced by a number of stakeholders: clinicians, scientists, policymakers, and insurers, among others. Often sidelined, however, are the most important stakeholders in high-quality health research: the patients that research is meant to help.
With a $5 million grant from the Agency for Healthcare Research and Quality, an interprofessional team of researchers from the University of Maryland, Baltimore (UMB) is taking patients off the sidelines and engaging them in the research process. Using Patient-Centered Outcomes Research (PCOR), the team gives patients a voice in their own care and lets them guide research in a way that ultimately improves that care for others.
Patients are consulted by researchers as they go about generating medical questions to be answered, designing studies to answer those questions, and disseminating the results. Patients’ engagement in the studies’ design and development gives those seeking care the evidence base they need to make treatment decisions that advance their own health priorities.
“Including patient perspectives in research improves that research as well as health care delivery,” says the grant’s principal investigator, C. Daniel Mullins, PhD, professor and chair of the School of Pharmacy’s Department of Pharmaceutical Health Services Research.
The “PATIENTS” program entails close collaboration among researchers from UMB’s schools of dentistry, law, medicine, nursing, pharmacy, and social work, as well as the School of Public Health at the University of Maryland, College Park. The PATIENTS team also has forged partnerships with community associations, churches, advocacy groups, health care providers, and, of course, patients themselves. “Each participant has helped advance our understanding of how to improve human health,” says Mullins.
The PATIENTS team is a diverse and accomplished group of professionals selected not only for their individual expertise, but also for their dedication to improving patient care and mentoring others to do the same.
PCOR is based on a simple ― but transformative ― promise: that research studies will focus on health questions and outcomes that matter most to patients. That means the research conducted must provide patients high-quality, reliable information about which approaches to care might work best, given their particular concerns, circumstances, and preferences.
“We know that patients have outcomes interests,” Mullins says. “They’re interested in regaining mobility, or better daily functioning, or perhaps being able to lead a more fulfilling social life.”
“PCOR is designed to provide meaningful evidence that enables informed health care decision-making by patients and other stakeholders,” explains Robin Newhouse, PhD, RN, NEA-BC, FAAN, co-investigator on the PATIENTS grant and chair of the Department of Organizational Systems and Adult Health in the School of Nursing. “PCOR means that when we’re designing research protocols, we’re finally listening to the patients and including what’s important to them.”
Newhouse guides PATIENTS activities related to the translation, dissemination, and implementation of findings. In 2011, the U.S. Government Accountability Office appointed Newhouse to the Methodology Committee of the Patient-Centered Outcomes Research Institute. The committee’s only nurse, she’s since been named its chair. Anthony Harris, MD, MPH, head of the division of genomic epidemiology and clinical outcomes at the School of Medicine, says Newhouse is “unparalleled” as a patient outcomes researcher.
For their work on the PATIENTS program, Mullins and Newhouse were named UMB’s 2014 Researchers of the Year.
Mullins attributes the team’s success not only to Newhouse’s internationally known expertise in PCOR but also to the close collaboration of the group’s cross-disciplinary members. Mary-Claire Roghmann, MD, MS, professor of epidemiology and public health in the School of Medicine, agrees. She says collaboration is necessary because of the research complexity that PCOR demands. Roghmann leads training efforts for PATIENTS, helping junior investigators become more seasoned PCOR researchers.
Claudia Baquet, MD, MPH, associate dean for policy and planning in the School of Medicine and director of the Center for Health Disparities, has dedicated her career to improving health care access for medically underserved and minority communities―removing barriers that impede disease prevention and detection, diminish the effectiveness of care, and inhibit patients’ participation in clinical trials. She also leads education initiatives designed to increase public trust in research.
“Dr. Baquet has been a mentor to me since I came to UMB,” says Mullins. “She’s taught me a lot about what it means to partner with the community.”
“Patients and other stakeholders have long been missing from biomedical research,” Roghmann says, “and their absence has reduced effectiveness when it comes to improving public health. PCOR will change that.”
And in the design, development, and dissemination of research, patients will be sidelined no more.