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The Patient-Engaged Research Center (PERC) at Henry Ford Health was established in 2013 through an AHRQ infrastructure grant. As part of the Department of Public Health Sciences, the Center conducts patient-centered outcomes research combining the patient’s perspective and outcome priorities with innovative research methods to create evidence-based approaches to improve patient care. PERC utilizes expertise from biostatisticians, epidemiologists, health behaviorists, clinicians, and patient advisors (patient and caregivers) in all phases of study planning and implementation, from study design, database development and data collection to data analysis. The mission of the PERC is to translate the patient voice into evidence-based care through community engagement and world-class research methods.

 

A team at Henry Ford Health has been approved for a $160,000 funding award through the Eugene Washington PCORI Engagement Awards (Engagement Awards) program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support better understanding of long COVID-19.  

 

Sara Santarossa, PhD, Assistant Scientist and Scientific Director of PERC leads the engagement project at Henry Ford Health. The project focuses on “Using Body Mapping to Develop a Patient Centered Research Agenda About Long COVID-19” is yet another way Henry Ford Health is leading the charge in understanding those who have been afflicted with COVID-19. Patients and caregivers, along with researchers and healthcare providers, play a key role as stakeholders in this project that work together to better understand the unique needs of COVID-19 long haulers. The project specifically focuses on utilizing body mapping as an innovative approach to capture the patient’s journey with long COVID-19. These body maps are put on display for the broader community in this virtual Body Mapping Gallery. Ultimately, the knowledge learned from this body mapping process will help the project team construct a fully formed patient-centered outcomes research/comparative effectiveness research (PCOR/CER) agenda.

 

“Using Body Mapping to Develop a Patient Centered Research Agenda About Long COVID-19”  is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results.  Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities and organizations interested in and able to participate in, share, and use patient-centered.