The Power of PROMs in Clinical Research
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. 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.
Andrea Pusic, MD, MHS
Director, PROVE Center, Brigham and Women’s Hospital
Chief, Plastic and Reconstructive Surgery BWH
Professor, Harvard Medical School
Medical Director, MGB PROMS
Maria Edelen, PHD
Asso. Director, PROVE Center, Brigham and Women’s Hospital
Asso. Professor, Harvard Medical Schoo
The Science of PROMs Part 1: Measuring What Matters
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. Kaur will share the development of the GENDER-Q, a PROM for use in gender-affirming healthcare. Lastly, Dr. Mundy will talk about LIMB-Q, a PRO instrument for lower extremity trauma patients.
Manraj Kaur, PhD- CIHR Postdoctoral Fellow, PROVE Center, Brigham and Women’s Hospital
Lily Mundy, MD– Asst. Professor, Plastic and Reconstructive Surgery, Johns Hopkins School of Medicine
Andrea Pusic, MD, MHS– Director, PROVE Center, Brigham and Women’s Hospital
Chief, Plastic and Reconstructive Surgery BWH
Professor, Harvard Medical School
Medical Director, MGB PROMS
The Science of PROMs Part 2: Modern Psychometrics, Machine Learning, and Artificial Intelligence
Patient-reported outcome measures (PROMs) are tools that assist with patient decision, making, monitoring, and outcome assessment. Modern psychometrics (eg, item response theory) and data science techniques (eg, machine learning) could improve the usefulness of patient-reported outcome (PRO) data initiatives. In this session, Dr. Jen Shin will provide the conceptual basis of item response theory (IRT) and provide examples of how to use IRT to validate PROMs for use in clinical research and practice. Dr. Chris Gibbons will summarize the evidence relating to PROs in clinical practice and introduce data science techniques to facilitate PRO collection and analysis. Dr. Gibbons will introduce and discuss two machine learning algorithms designed to facilitate PRO-based decision-making and monitoring in clinical practice.
Chris Sidey-Gibbons, PhD
Asso. Professor and Deputy Chair, Department of Symptom Research
Chief, Section of Patient- Centered Analytics
Director, MD Anderson Center for INSPiRED Cancer Care (Integrated Systems for Patient-Reported Data)
Jennifer Shin, MD
Vice Chair, Faculty Development
Asso. Professor, Otology and Laryngology, Harvard Medical School
Where the Rubber Meets the Road: PROMs for Clinical Decision-Making
Patient-reported outcome measures are increasingly used to monitor the quality of healthcare services and inform patient-centered decisions at the health system level. However, comparatively little has been done to evaluate the potential for these same data to be used to improve decision-making at the individual patient level. In this seminar, Dr Franklin will share results from her PCORI-funded research where she led the design of a patient-clinician decision report that includes predicted patient outcomes based on national data. Dr. Bansback will describe the development and testing of tailored PROMs-based patient decision aid aimed to help patients with osteoarthritis of the knee consider whether to have joint replacement surgery.
Patricia Franklin, MD –
Professor, Medical Social Sciences,
Medicine (Rheumatology), Orthopedics
Co-Director, Outcomes and Measurement Hub
Nick Bansback, PhD –
Asso. Professor, School of Population and Public Health, University of British Columbia
Scientist, Centre for Health Evaluation and Outcome Sciences (CHEOS)
Program Director, Master of Health Administration
The Missing Voices- Diversity, Equity, and Inclusion in PRO Research
This panel of physicians and researchers will discuss several aspects of ID&E in PRO research. Dr. Ortega will cover language equity and Dr. Calvert will discuss ethical considerations. Dr. Jackson will share information on equitable enterprise-wide PRO data and Dr. Long Azad will discuss accessibility considerations.
Chao L. Azad, MD, MPH- Plastic and Reconstructive Surgery, Johns Hopkins Medicine, University of Maryland
Gezzer Ortega, MD, MPH- Asst. Professor, Surgery
Innovation for Equitable Surgical Care, Center for Surgery and Public Health
BWH Adj. Faculty, PROVE Center
Nadine Jackson, MD, MPH- Asso. Professor, Harvard Medical School
Medical Director, DFCI Patient Reported Data
Medical Oncologist, DFCI Gastrointestinal Cancer Center
Leader, DFCI Inclusion, Diversity, & Equity Clinical Trial Access Committee
Melanie Calvert, PhD- Professor, Outcomes Methodology, NIHR Senior Investigator
Director, Centre for Patient Reported Outcomes Research
Director, Birmingham Health Partners Centre for Regulatory Science and Innovation