Dr. Edelen and Dr. Pusic have been awarded a $2.9M R01 award for the study, “Increasing Engagement of Diverse Patients in Patient Reported Outcome Measurement to Address Breast Cancer Care Disparities using Health Information Technology in Community Cancer Settings.”
Disparities in breast cancer-related outcomes are pervasive and have been widely documented among racial and ethnic minorities, especially Black women. Substantial evidence demonstrates that routine patient-reported outcome (PRO) data collection using health information technology (HIT) results in improved cancer care delivery; however, PRO reporting remains low among Black patients and within the community cancer care (CCC) settings where they often receive care, and this increases disparities.
The objectives of this project, in partnership with the Association of Community Cancer Centers, are to use implementation science and health equity frameworks to develop and implement routine health information technology-assisted collection of patient-reported outcome (PRO) data at community cancer care settings serving a high proportion of Black patients with breast cancer. Completion of this project will produce generalizable knowledge that can be used to unlock the benefits of PRO reporting to historically underserved patients and advance equitable cancer care.
Maria Orlando Edelen, PhD
Associate Director, Patient-Reported Outcomes, Value & Experience (PROVE) Center
Associate Professor of Surgery, Harvard Medical School
Dr. Edelen is a quantitative psychologist and associate director of the Patient-Reported Outcomes, Value and Experience (PROVE) Center at Brigham and Women’s’ Hospital. Her area of expertise is in psychometric methodology and health policy research with a special emphasis on patient-reported outcomes (PROs). Throughout her career, Dr. Edelen has led or contributed to the development, evaluation and refinement of numerous PRO measures (e.g., the PROMIS Smoking Assessments, palliative care patients’ perception of feeling heard and understood, a measure of stigma associated with seeking mental health treatment on the military, asthma-related quality of life, asthma control, cancer stigma). Other work has focused on the development of PRO-based quality measures in primary and palliative care, and patient assessment in post-acute care and hospice.
Her current work includes leading two NIH-funded PRO development projects: an NCCIH project to develop a clinically relevant short profile measure of eight PROMIS domains of health-related quality of life (the PROMIS-16), and an NIA-funded project to develop a brief PRO measure to screen for cognitive impairment (the PRO-CS). She also co-leads the PROVE Center team in the implementation of imPROVE, a patient-centered HIT data collection and feedback tool for breast cancer patients at the Brigham and Dana-Farber Cancer Institute, and she supports multiple PRO initiatives at the Brigham and across the enterprise.
Dr. Edelen graduated from Boston College with a BA in psychology. She holds a master’s degree and a PhD in quantitative psychology from the L.L. Thurstone Psychometric Laboratory at the University of North Carolina, Chapel Hill.
Andrea Pusic, MD, MHS
Chief, Division of Plastic and Reconstructive Surgery, Brigham and Women’s Hospital
Joseph E. Murray Professor of Surgery, Harvard Medical School
Medical Director, Patient-Reported Outcome Measures (PROMs) Program, Mass General Brigham
Director, Patient-Reported Outcomes, Value & Experience (PROVE) Center
Dr. Pusic is the chief of the Division of Plastic and Reconstructive Surgery at Brigham and Women’s Hospital and the Joseph E. Murray Professor of Surgery at Harvard Medical School. She is an internationally recognized thought leader in patient-reported outcome measurement and director of the Patient-Reported Outcomes, Value & Experience (PROVE) Center at Brigham and Women’s Hospital. The patient-reported outcomes measures that she and her team have developed for surgical patients have been widely adopted for research and clinical care (www.qportfolio.org). Dr. Pusic has been funded by the National Institute of Health (NIH), the Patient-Centered Outcomes Research Institute (PCORI) and the Agency of Healthcare Research and Quality (AHRQ). In collaboration with the American College of Surgeons, she currently leads an AHRQ-funded study that has expanded PRO collection to 64 hospitals nationwide through the National Surgical Quality Improvement Program (NSQIP). Dr. Pusic has authored and co-authored over 300 peer reviewed papers.
Dr. Pusic’s research focuses on the measurement of quality of life and patient satisfaction in surgery. Dual training in epidemiology and surgery has enabled her to lead a team of experts in psychometrics, quality of life and social science methods to develop, validate and use new quantitative measures to assess patient outcomes. The patient-reported outcomes instrument she developed for breast surgery, the BREAST-Q, has been widely adopted for research and clinical care and serves as the basis for development of other outcome measures in surgery.
She completed her medical degree at the Cumming School of Medicine (University of Calgary) in Canada and master of public health at Johns Hopkins University. She completed a general surgery residency at Dalhousie University in Nova Scotia, and a plastic surgery residency at McGill University in Montreal, followed by a plastic and reconstructive surgery fellowship at Memorial Sloan-Kettering Cancer Center (MSKCC).