Session 1 – Introduction to PRO measurement
In this first session, Dr. Pusic will kick off our PROMs Summer School Series with a brief overview of the weeks to come and give us an outline of what PROMs are and why they are important for research and caring for patients. Next, Dr. Sidey-Gibbons will introduce modern psychometric methodologies used to create rigorous tools to assess intangible health-related phenomena such as quality of life, satisfaction, and psychological function. The talk introduces foundational concepts such as reliability and validity and summarizes cutting-edge techniques including item response theory and computerized adaptive testing
Dr. Pusic is the Director of the PROVE Center, the Chief of Plastic and Reconstructive Surgery at Brigham and Women’s Hospital, and a Professor of Surgery at Harvard Medical School. She is a leader in the field of patient-reported outcomes with over 300 publications on this topic. Her research involves developing and implementing tools to access outcomes from the patient perspective.
Dr. Sidey-Gibbons is Associate Professor and Deputy Chair at the MD Anderson Department of Symptom Research and Director of the MD Anderson Center for INSPiRED Cancer Care. His research is concerned with the development and implementation of tools to collect, analyze, and predict patient-reported outcomes. He is Director of Health Assessment and Innovation at the University of Cambridge Psychometrics Center where he teaches courses on modern psychometrics, programming, and data science.
Session 2 – Developing a PRO measure
In this session, Dr. Pusic will focus on the important of qualitative research methods to establish content validity for new PROMs. We will review the best practices for the development of a PROM. Dr. Michael Wu will talk about LARYNX-Q, a new PROM for assessing health-related quality of life of patients with total laryngectomy and Dr. Manraj Kaur will share the development of the GENDER-Q, a PROM for use in gender-affirming healthcare.
Dr. Pusic is the Director of the PROVE Center, the Chief of Plastic and Reconstructive Surgery at Brigham and Women’s Hospital, and a Professor of Surgery at Harvard Medical School. She is a leader in the field of patient-reported outcomes with over 300 publications on this topic. Her research involves developing and implementing tools to access outcomes from the patient perspective.
Dr. Wu is a 4th year resident in Otolaryngology-Head and Neck Surgery at Harvard. He graduated from Harvard College with a degree in molecular and cellular biology and obtained his medical degree from Harvard Medical School. His main interests are functional outcomes and quality of life in patients with head and neck cancer.
Dr. Kaur is a health economics and outcomes researcher with extensive experience in the measurement of patient-reported outcomes in clinical research and practice and in conducting micro-costing and cost-effectiveness studies.
Session 3- Implementing PROs in Clinical Practice I
Dr. Baumhauer is a clinically active Orthopedic Surgeon in addition to her administrative roles. Her primary research interest focuses on the use of patient reported outcomes (PROs) in clinical decision-making to improve the care provided to patients. She has studied how collecting and sharing PROs affect patient engagement, patient satisfaction and clinical efficiency.
Dr. Sisodia is the Chief Quality Officer of Mass General Brigham and a clinically active Gynecologic Oncologist at Mass General Hospital. Since 2018, Dr. Sisodia has overseen the Mass General Brigham patient reported outcomes program, which is the largest clinical PRO program in the world with more than 15,000,000 PROMS collected in more than 80 specialties and 200 clinics. Her research interests are in the implementation science of patient reported outcomes for clinical usage, as well as using patient reported outcomes to improve the care of women with gynecologic malignancies.
The data is clear that the collection and use of patient reported outcomes improves patient care and is perhaps a better marker of the quality of care provided. Despite that, widespread implementation and clinical use of PROs has lagged. The goal of this talk is to review the data around use of PROs in clinical care, as well as both implementation science and pragmatic advice on how to have a successful PRO program as well as build a successful, usable DataMart for PROs in both clinical care and research.
Session 4- Implementing PROs in Clinical Practice II
Dr. Nelson is a plastic surgeon at Memorial Sloan Kettering Cancer Center who specializes in breast reconstruction, complex oncologic reconstruction, and abdominal wall hernia. He leads MSKCC’s BREAST-Q program. His research focuses on patient-reported outcomes after reconstruction, particularly breast reconstruction.
Dr. Koppert is associate professor surgical oncology at the Erasmus MC Rotterdam. In 2014, she established the multidisciplinary Academic Breast Cancer Center, a center of excellence for hereditary breast cancer. Her main clinical focus is on breast cancer in young women, BRCA1/2 gene mutation carriers and complex breast cancers. Her major research interests are quality of breast cancer surgery, prediction of outcome and Value Based Healthcare.
Dr. Jonas Nelson will share the implementation of routine PROM collection in breast reconstruction at MSK. The BREAST-Q has been part of routine clinical care at MSKCC for over 10 years. Dr. Nelson will focus on the lessons learned, compliance and future directions of the BREAST-Q PROM. Dr. Linetta Koppert’s talk will review the integration of PROMs at the Academic Breast Cancer Center at Erasmus MC and using PROMs data for patient-centered decision making.
Session 5- PROs in Clinical Research
Dr. Edelen is the Associate Director of the PROVE Center. Her area of expertise in psychometric methodology and health policy research with a special emphasis on PROs. She has made significant contributions to the broad goal of applying psychometric methods, especially item response theory (IRT), traditionally utilized in educational testing, to the development, evaluation, and refinement of PROs.
Dr. Mou is a Minimally Invasive Surgery (MIS) Fellow at Emory University. He received his undergraduate degree in biochemistry at Harvard College and his medical degree at Emory University. During his research tour, he was a Harvard Medical School Scholar in Quality and Safety and a Torchiana Fellow in Healthcare Health Policy and Management. He also obtained an MPH degree in Health Management from the Harvard School of Public Health.
In this talk, Dr. Edelen will provide a roadmap for integrating PRO measurement into clinical research. She will highlight critical study design questions such as how to define patient population, how to select the most appropriate PROMs, and how to identify the best timepoints and approaches for PRO assessment. Dr. Mou will provide examples from his Brigham BODY-Q study and discuss differences in PROs based on surgical technique and QOL trajectory.