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Please join us for our Monthly Seminar on June 6th. Use link below to register:

https://partners.zoom.us/meeting/register/tZcvduGtqjsqG9dZ_XL-K2IuW4k5nLYWw62F

 

Seminar Recordings

Karen Wong joined us on October 5, 2020, for a discussion on the development and implementation of PROs in low and middle-income countries

Karen Wong Riff is a Pediatric Plastic Surgeon-Scientist at SickKids Hospital and the University of Toronto. She completed her MD and Plastic Surgery residency at the University of Toronto, followed by fellowship training at SickKids and Chang Gung Memorial Hospital in Taiwan. She has a Ph.D. in Health Research Methodology from McMaster University. She is the co-developer of the CLEFT-Q and the FACE-Q Craniofacial Module, two patient-reported outcome measures for patients with conditions affecting facial appearance and function. Her clinical practice is focused on cleft care and microsurgical reconstruction.

On November 2nd, 2021 two groups presented their work focusing on PROMs in the time of COVID-19

Dr. Audrey Lim and Rakhshan Kamran from McMaster University in Canada presented their talk titled, Using PREMs to Improve Virtual Care Delivery in Pediatric Complex Care during COVID-19: A Quality Improvement Initiative.

Dr. Elena Tsangaris and Dr. Manraj Kaur from the PROVE Center presented their talk titled, Using Patient-Reported Outcome Measures to Assess Psychological Well-being in the US general population.

Dr. Janel Hanmer joined us on February 1, 2021, to discuss health utility measurements.

Dr. Hanmer’s primary research focus is on health-related quality of life measurement, particularly health utility measurement. Her recent work has focused on developing a new health utility score for the Patient-Reported Outcomes Measurement Information System (PROMIS). This work combines item response theory and econometric theory.

In addition, Dr. Hanmer is the Medical Director for Patient-Reported Outcomes at UPMC where she oversees the design and implementation of patient-reported outcome measure collection in clinical settings through Epic. In this role, she evaluates patient-reported outcomes in clinical populations and the effect of measure collection on practices. Dr. Hanmer is an attending physician on the inpatient general internal medicine service at UPMC Montefiore.

Dr. Linette Koppert’s joined us on March 2, 2021, for a lecture on PROM implementation at Erasmus MC.

Dr. Linette Koppert is a surgical oncologist at the Erasmus MC Cancer Institute. Her areas of focus are breast cancer and thyroid cancer. In 2014, she co-founded the Academic Breast Cancer Center, a center of excellence for hereditary breast cancer. Dr. Koppert’s main focus is on breast cancer in young women, BRCA 1/2 gene mutation carriers, and complex breast cancers.

Dr. Koppert’s major research interests are the quality of breast cancer surgery, innovative measures to predict the outcome of surgical treatment, and Value-Based Healthcare.

 

Dr. Dagmar Amtmann joined us on April 5, 2021, at the University of Washington Caregiver stress and Benefit Scale.

Dr. Amtmann will provide an overview of the psychometric properties of the UW Caregiver Stress and Benefit Scale, summarize what we have learned about caregiver stress and benefit in both the USA and EU, and provide suggestions for how to use the scales in clinical practice to screen for caregivers who are overwhelmed and may benefit from more support.

Dr. Amtmann is a health outcomes researcher, a Research Professor at the University of Washington (UW), Department of Rehabilitation Medicine, and the Principal Investigator of the UW Center on Outcomes Research in Rehabilitation (UWCORR) that houses numerous projects related to measuring health outcomes. She leads the outcomes measurement core of the NIH-funded outcomes research in prosthetics and orthotics, and she is PI of the National Data and Statistical Center for NIDILRR funded Burn Model System.

Dr. Alex Turchin’s joined us on Monday, May 10, 2021 to share and demo his Canary: A free natural language processing platform for clinicians and researchers.

Natural Language Processing (NLP) technology can make it possible to discover and analyze critical knowledge buried in unstructured clinical data. Nevertheless, widespread adoption of NLP has yet to materialize; the technical skills required for the development or use of such software can present a major barrier for medical researchers. In particular, no free NLP software geared towards biomedical researchers with limited computer science backgrounds has been made available. To address this issue we have developed CANARY, a free and open-source solution designed for users without NLP, software development, or engineering experience. The software allows users to build NLP tools, ranging from simple to complex, using a graphic user interface. Canary comes with an extensive user manual and a number of starter NLP examples as well as a Library containing production-grade NLP tools developed by Canary users. Canary can be used to analyze a wide range of narrative electronic documents, including progress notes, discharge summaries, radiology reports, etc. It supports both RPDR and EDW narrative data formats.

Dr. Jonas Nelson joined us from Memorial Sloan Kettering Cancer Center to share their implementation of routine PROM collection in their breast reconstruction clinic.

Anuj K Dalal, MD, SFHM is an Associate Physician with the Hospitalist Medicine Unit, Division of General Medicine at Brigham Health, and Associate Director, Harvard-Brigham Research Fellowship in Hospital Medicine. He is an Associate Professor at Harvard Medical School. Dr. Dalal is a graduate of Cornell University and obtained his MD from SUNY Upstate Medical University. He completed residency training in internal medicine at the Hospital of the University of Pennsylvania. He completed the Program in Clinical Effectiveness at Harvard School of Public Health and holds a Graduate Degree in Medical Informatics from Oregon Health & Science University. He is board certified in both internal medicine and clinical informatics. He has completed the Brigham Leadership Program at Harvard Business School.

His work has focused on developing, implementing, and evaluating novel use of interoperable digital health technologies in the acute care, care transitions, and ambulatory settings to improve facilitate closed loop communication of test results; engage patients and caregivers in self-care management; support patient-centered communication; and stratify patients at risk for harm using EHR data.  He has led and/or worked on numerous studies related to test result management, medication reconciliation, patient engagement, care team communication, discharge safety, and diagnostic safety. These projects have been funded by AHRQ, CRICO, PCORI, and Gordon and Betty Moore Foundation.

He currently leads the AHRQ-funded Patient Safety Learning Laboratory (PSLL) at BWH, a multidisciplinary team with expertise in systems engineering, human factors and usability, agile software development, mixed methods analysis, and implementation science to ensure that our Epic-integrated digital health infrastructure serves to improve safety of diagnosis and therapy in the hospital. Additionally, he recently received a AHRQ R01 to use novel predictive approaches and EHR-integrated digital health infrastructure to design tools for patients to engage in understanding their risks during transitions and real-time symptom monitoring using validated ePROs during care transitions.

Dr. Dalal has presented his work at local, regional, and national conferences and has made meaningful contributions to the literature. Dr. Dalal is nationally recognized in his field and his research has been published extensively at the intersection of informatics, quality, and safety. He has received numerous awards in innovation both locally and nationally. He has served on expert panels and task forces, and has co-chaired conferences at the national level. He has chaired Society of Hospital Medicine’s IT Leadership and Education Committee and delivered workshops related to use of technology by hospitalists for education and patient care. He works closely with the hospital’s IT and quality and safety leadership to align and support digital health research and innovations across Brigham Health.

In this talk, we will discuss the patient-level barriers to completion of patient-reported outcomes measures (PROMs) and delve into one specific barrier: low literacy. We begin by reviewing the frameworks currently used to conceptualize the implementation of PROMs and how they influence our awareness of existing barriers. We then focus on how patients’ literacy levels specifically affect PROM completion. We share our group’s ongoing work of designing a multimedia PROM that aims to expand our ability to capture PROs in low literacy populations and promote equity and inclusivity in PRO measurement.

Dr. Chao Long is a surgeon-scientist who conducts health services research aimed to increase access to high quality, patient-centered, and affordable surgical care in the US and abroad. Her current research centers on promoting equitable evaluation of patient-reported outcomes in low literacy populations. She is currently a PGY-4 plastic and reconstructive surgery resident in the Johns Hopkins/University of Maryland program. She received her MD from Stanford University, her MPH from Johns Hopkins Bloomberg School of Public Health, and her bachelor’s degree from Princeton University.

This presentation will highlight how different data visualizations can be used to gain insights into PRO data. At the same time discussing when and when not to use certain data visualization techniques based on the audiences and what it is you wish to communicate.

Dr. Bellinda King-Kallimanis has worked in patient-focused research for the past 17 years. Her background in statistics and measurement provides a solid foundation for working with patients and caregivers to design research studies that aim to connect the patient voice with healthcare professionals, regulators, policymakers, and developers of drugs to ensure that their voices are heard and incorporated into decisions. Prior to joining LUNGevity as Director of Patient-Focused Research, she worked at the US Food and Drug Administration in the Oncology Center of Excellence on the Patient-Focused Drug Development team. There, Dr. King-Kallimanis worked on the development and launch of Project Patient Voice, a resource for patients and caregivers along with their healthcare providers to look at patient-reported symptom data collected from cancer clinical trials. She received her Bachelor of Social Science and her Master of Science in applied statistics from Swinburne University of Technology in Melbourne, Australia, and her PhD in psychometrics from the Academic Medical Center in Amsterdam, Netherlands

The talk will briefly review challenges and opportunities for evaluating PROs both in clinical trials settings and clinical practice settings.  It will then describe the PROTEUS Consortium and it’s available (and planned) resources that are designed to help stakeholders and users improve these applications of PROs in research and patient care.

Dr. Michael Brundage, MD MSC FRCP(C) is a Professor of Oncology and of Public Health Sciences at Queen’s University in Kingston.  He graduated from medical school at Queen’s and completed training in Radiation Oncologist at Princess Margaret Hospital and University of Toronto, followed by post-graduate training in Epidemiology at Queen’s, where he is now a Clinician Scientist.  His research focuses on patient-reported outcomes and quality of life measurement (both in clinical practice and in clinical trials) and on quality of cancer care, with an emphasis on quality initiatives in oncology.

In the context of his research portfolio he has had the privilege of working with many national and international organizations.   These include his roles as the Quality Lead for the Radiation Oncology Program at Cancer Care Ontario and member of the Cancer Quality Council of Ontario, the Canadian Cancer Trials Group, EORTC and ISOQOL.  He is the Past-President of the Canadian Association of Radiation Oncology, and a founding member of the Canadian Partnership for Quality of Radiotherapy, an organization that promotes knowledge dissemination and implementation strategies for the use of PROs in clinical practice in Canada.  He is co-PI for the PROTEUS Consortium (with the PI Dr. Claire Snyder) which also promotes quality of PROs both in clinical practice and clinical trials internationally.

Despite a significant increase in PROMs-related academic output, systematic implementation of PROMs in the clinical setting is lacking. This talk will review the obstacles to implementing PROMs by exploring the perspectives of various stakeholders including physicians and hospital leaders.

Danny Mou is a general surgery chief resident at Brigham and Women’s Hospital. 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. Next year, he will be a Minimally-invasive Surgery Fellow at Emory University.

 

May 2022- Is a PRO VALUE-able, When and How?

Dr. Feng Xie is a health economist whose research centers around economic evaluations conducted alongside clinical trials and based on models in the context of health technology assessment and coverage policy making. He is particularly interested in measuring and valuing patient-reported outcomes which is one of the most challenging parts in patient-centered health care research.

Patient-reported outcome (PRO) has become increasingly popular in the era of patient-centered health care and decision making. Multiple guidelines are available to provide useful guidance on the development of PRO instruments (e.g. FDA and EMA). However, there exist debates, controversies, and confusions about valuing PROs. This talk will walk through key concepts in an attempt to delineate some nuances in measuring and valuing PROs for clinical and economic evaluations.

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