Register today to attend Measuring What Matters, a symposium focused on how Australia uses clinical (quality) registries in oncology and the role of patient-reported outcomes measures (PROMs) as part of these registries. Scheduled for 18 July 2023, this virtual event will consist of session presentations and live Q&As with the speakers.
Session 2: International examples of PROMs in oncology clinical registries
The second session of the 2023 Measuring What Matters Symposium will include a series of presentations, with each presentation providing a detailed example of oncology clinical registries that have implemented PROMs in the United States and Europe. This session will be followed by an interactive panel discussion where questions from the audience will be answered.
Roxanne E. Jensen, PhD
National Cancer Institute
Roxanne E. Jensen, Ph.D., is a Program Director in the Outcomes Research Branch of Health Care Delivery Research Program at the National Cancer Institute. Dr. Jensen’s research focuses on the implementation and use of patient-reported outcomes (PRO) in cancer research and clinical practice settings. Currently, Dr. Jensen co-leads NCI’s Telehealth Research Centers of Excellence (TRACE), focused on generating robust evidence base for patient-centered, sustainable telehealth models of cancer care delivery.
Dr. Jensen is the Scientific Lead for the SEER-MHOS data resource. This research resource links Surveillance Epidemiology and End Results (SEER) cancer registry data with Medicare Health Outcomes Survey (MHOS) data from the Centers for Medicare & Medicaid Services. SEER-MHOS offers investigators the opportunity to examine cancer health outcomes, such as health-related quality of life and activities of daily living, along with clinical and epidemiologic information.
Kelly de Ligt, PhD
Netherlands Cancer Institute – Antoni van Leeuwenhoek
My name is Kelly de Ligt, and I am working at the Netherlands Cancer Institute in Amsterdam, the Netherlands. My job consists of two aspects: research and implementation.
This means that I implement the things I am studying, and I study the things I am implementing. I am responsible for the organization-wide implementation of patient reported outcome measures (PROMs) in clinical practice at our institute. My research is focused on health-related quality of life in cancer patients, specifically based on real-world data collected through the PROMs. Furthermore, we evaluate the use of PROMs in our institute and how we can personalize care towards the needs of our patients. All towards quality of care improvements.
Bellinda King-Kallimanis, PhD
Dr. King-Kallimanis serves as Director of Patient-Focused Research at the LUNGevity Foundation. She is a psychometrician by training and has spent the last 10 years working primarily on research surrounding patient-focused drug development. In her work at LUNGevity she aims to ensure that patient and caregiver voices are incorporated in decision making across a wide variety of stakeholders. Dr. King-Kallimanis also has experience in government, industry and academia and has published over 70 peer-reviewed papers. She received her Bachelor of Social Science and 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 International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).
Together, we are creating a future in which patient perspective is integral to health research, care and policy.