The Patient-Centered Outcomes Research Institute (PCORI) selected CNTR for a $230,000 Eugene Washington PCORI Engagement Award for a project titled “The Community of Trauma Care – Partnering with Patients and Caregivers to Improve Injury Outcomes.”
The goals of the project are to:
- Establish a stakeholder Injury Research Engagement Panel (I-REP) to partner with trauma researchers conducting patient-centered research from conception to dissemination,
- Develop strategies regarding the informed consent process with patients and legally authorized representatives in emergency settings, and methods that increase follow-up participant engagement, and
- Conduct reciprocal education between patients/caregivers and researchers/clinicians.
Co-Principal Investigators on the project are Deborah Stein, MD, MPH, Chief of Surgery at the Zuckerberg San Francisco General Hospital and Trauma Center, and Anna Newcomb, PhD, MSW, LCSW, president of the American Trauma Society and Trauma Research Manager at the Inova Fairfax Trauma Center. The team of key personnel includes Alexandra McConnell-Hill, a trauma survivor and patient navigator at at Zuckerberg San Francisco General; Elliott Haut, MD, PhD, Vice Chair of Quality, Safety, & Service in the Department of Surgery at The Johns Hopkins University School of Medicine; Rochelle Dicker, MD, Co-Chair of the UCLA Program for the Advancement of Surgical Equity and the School of Medicine’s Health Equity and Translational Social Science Theme; Rosemary Kozar, MD, PhD, Professor of Surgery and Co-Director of the Shock Trauma Anesthesia Research (STAR) Center at the University of Maryland School of Medicine; and Alice Gervasini, PhD, RN, NE-BC, Nurse Director for the Trauma and Emergency Surgery Service at the Massachusetts General Hospital.
CNTR recognizes that the most effective care strategies require a partnership with the injured patient and family. Despite a long standing relationship with the American Trauma Society’s (ATS) Trauma Survivors Network (TSN) and the Health Alliance for Violence Intervention (HAVI), the trauma research community has not systematically collaborated with patients and caregivers in conducting patient-centered outcomes research and comparative effectiveness research. Both TSN and HAVI work closely with underrepresented and vulnerable injured populations, and their inclusion will enhance this project and improve trauma care knowledge.
“We know that engaging patients, caregivers, and other stakeholders will advance research to benefit trauma patients,” said Dr. Stein. “Starting with focus groups to identify patients’ and caregivers’ preferences on a range of issues related to engaging in trauma research, our plan is to establish an enduring stakeholder panel whom investigators can consult when developing strategies for informed consent, study follow-up, the collection of long-term outcomes and other challenging issues.” The exchange of education between patients/caregivers and researchers/clinicians promises a virtuous cycle of improvement as we tackle the most persistent challenges in conducting trauma-related research. “Most importantly, we know that this project will result in better outcomes for our patients, which is our primary concern,” she added.
This integrated partnership with our most vulnerable populations will inform our understanding of issues concerning legally authorized representatives (LAR), Exception from Informed Consent (EFIC) requirements, and attitudes of research participants from underrepresented and vulnerable populations. Active engagement with such patient communities will allow us to understand what matters most to patients, how research is viewed by stakeholders, and how researchers are most likely to attract, retain, or hinder participation in research studies. Through the project, we’ll collect input from patients who may benefit from trauma comparative effectiveness research to assure that the outcomes we measure and the questions we research are meaningful, respectful, and relevant to the injured patient.
The two-year project kicks off within the next few weeks.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. Learn more.