Measuring What Matters 2023

Description

Measuring What Matters in Oncology:
Translating research into clinical practice using clinical registries

Cancer is a leading cause of morbidity and mortality globally. Clinical (including quality) registries are recognized as important tools for monitoring and evaluating quality of care by measuring variation from what is considered evidence-based, optimal practice (often defined a priori by a consensus process involving clinical experts and consumers). The complementary use of clinical and patient-reported data provides a comprehensive assessment of the impact of compliance, and through insights into variations between institutions (through benchmarking performance), registries provide invaluable opportunities for implementation research.

The 2023 Measuring What Matters virtual symposium focuses on clinical (quality) registries in oncology and explores the role of patient-reported outcomes measures (PROMs) as part of these registries.

Symposium Committee Co-Chairs

Ashika Maharaj, BPharm PhD
Monash University (Affiliate), Australia
Delft University of Technology (TU Delft), The Netherlands

Liane Ioannou, BSc(Hons) PhD
Victorian Cancer Agency Mid-Career Research Fellow, Cancer Research Program
Victoria, Australia

ISOQOL members receive a discounted rate. To view membership rates, click here.

Measuring What Matters in Oncology:
Translating research into clinical practice using clinical registries

Session 1: Overview of clinical registries in Oncology and Patient-reported outcomes data
Description
This session will include a series of presentations, including an overview of oncology clinical quality registries (CQRs) compared to population registries; the inclusion of PROMs in a clinical quality registry setting; the national implementation of PROMs in CQRs in Sweden; and the use of big data analytics to support clinical registry research. This session will be followed by an interactive panel discussion that will allow for questions from the audience.

Speakers

John Zalcberg, OAM MB BS PhD FRACP FRACMA FAHMS FAICD, Alfred Health and Monash University, Australia
Rasa Ruseckaite, PhD (Neuro), MCompSc, BCompSc, School of Public Health and Preventive Medicine, Australia
Anna Stecksén, PhD, MSc Public Health, Lic. Physiotherapist, Norrland’s University Hospital, Sweden

Session 2: International examples of PROMs in oncology clinical registries
Description
This session 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.

Speakers

Roxanne E. Jensen, PhD National Cancer Institute, Maryland, United States
Kelly de Ligt, PhD, Netherlands Cancer Institute – Antoni van Leeuwenhoek, Netherlands
Belinda King-Kallimanis, PhD, LUNGevity Foundation, United States

Session 3: The role of clinical quality registries in integrating PROMs into clinical care
Description
The last session of the MWM Symposium will focus on current translational studies within clinical quality registries. Examples include two Australian projects (PROpatient and BroSupPORT) that are examples of how to integrate PROMs into clinical care. This session will be followed by an interactive panel discussion where questions from the audience will be answered.

Speakers

Jeremy Millar, FRANZCR FAChPM, Monash University, Australia
Liane Ioannou, BSc(Hons) PhD, Victorian Cancer Agency Mid-Career Research Fellow, Cancer Research Program, Victoria, Australia

Symposium Co-Chairs

Ashika Maharaj, BPharm PhD, Monash University (Affiliate), Australia, Delft University of Technology (TU Delft), The Netherlands
Ashika Maharaj has a background in pharmacy, patient safety, quality of care, and public health. Prior to moving to the Netherlands in 2021, she was based within the Cancer Research Program at Monash University Australia and was involved in developing a pancreatic, and a national primary liver cancer registry. As a pharmacist, Ashika applied herself in clinical and community settings, worked at a large metropolitan hospital in New Zealand and led projects to monitor adverse events secondary to medical care. Ashika is now based at Delft University of Technology (TU Delft) within the Faculty of Technology, Policy and Management.

Liane Ioannou, BSc(Hons) PhD, Victorian Cancer Agency Mid-Career Research Fellow, Cancer Research Program, Victoria, Australia
Dr Liane Ioannou is a mid-career research fellow within the School of Public Health and Preventive Medicine at Monash University. Dr Ioannou has focused her research on extending the science of registries to evaluate and improve the quality of health care in cancer. She was awarded a Victorian Cancer Agency (VCA) Mid-career Fellowship in 2020 and is currently leading her own program of supportive care research for patients with UGI cancer as well as being an academic research fellow on the Upper Gastrointestinal Cancer Registry (UGICR) and the Australian and New Zealand Thyroid Cancer Registry (ANZTCR).

Session 1: Overview of clinical registries in Oncology and Patient-reported outcomes data

John Zalcberg, OAM MB BS PhD FRACP FRACMA FAHMS FAICD, Alfred Health and Monash University, Australia
Professor Zalcberg is Head of the Cancer Research Program at Monash University, providing academic leadership to numerous clinical quality registries and holds the inaugural Tony Charlton Chair in Cancer Research at the Alfred Hospital and Monash University, Melbourne, Australia. Prior to this appointment, he was Director of the Division of Cancer Medicine at the Peter MacCallum Cancer Centre. His research interests include quality of care and drug development for patients with GI cancer – an area in which he continues to practice. He has published over 350 articles in peer-reviewed journals.

Rasa Ruseckaite, PhD (Neuro), MCompSc, BCompSc, School of Public Health and Preventive Medicine, Australia
Rasa Ruseckaite is a Senior Research Fellow and a Deputy Head with the Clinical Outcomes Data Reporting and Research Program at Monash University's School of Public Health and Preventive Medicine in Melbourne, Australia. She has been involved in a large number of qualitative and quantitative studies on PROMs in patients with cancer, dementia, venous leg ulcers, cystic fibrosis and pelvic floor disorders. Additionally, Dr. Ruseckaite is currently leading a world-first study aiming to develop guidelines for PROMs inclusion in clinical registries. She is also a Co-Editor-in-Chief of the Journal of Patient-Reported Outcomes.

Anna Stecksén, PhD, MSc Public Health, Lic. Physiotherapist, Norrland’s University Hospital, Sweden
Since 2019 Anna has been working with equity and quality within cancer care as a care developer at Regional Cancer Centre North, in Umeå, Sweden. A central part of our assignment is to develop national knowledge support, such as national quality registries, cancer patient pathways and care guidelines. One part of her work is to promote collection, analysis and use of patient-reported outcome measures within Swedish cancer care at group and individual level. She became a licensed physiotherapist in 2006, master’s in public health in 2009 and PhD in medical science 2017, at Umeå University, Sweden. She has clinical experience from neurological rehabilitation.

Session 2: International examples of PROMs in oncology clinical registries

Roxanne E. Jensen, PhD National Cancer Institute, Maryland, United States
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, Netherlands
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.

Belinda King-Kallimanis, PhD, LUNGevity Foundation, United States
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.

Session 3: The role of clinical quality registries in integrating PROMs into clinical care

Jeremy Millar, FRANZCR FAChPM, Monash University, Australia
Professor Jeremy Millar helps lead the Australia and New Zealand Prostate Cancer Outcomes Registry (PCOR-ANZ) and the related True North Global Registry, from his position in the Cancer Research Program in the Monash University Department of Epidemiology and Preventive Medicine. These registries provide regular clinical indicator reports to clinicians and facilities in order to identify variation and to facilitate—and measure—improvement. He is a practicing Radiation Oncologist (at Alfred Health, in Melbourne), the Chair of Cancer Council Victoria, and on the Council of the Faculty of Radiation Oncology (RANZCR) where he also chairs the Quality Improvement Committee.

Liane Ioannou, BSc(Hons) PhD, Victorian Cancer Agency Mid-Career Research Fellow, Cancer Research Program, Victoria, Australia
Dr Liane Ioannou is a mid-career research fellow within the School of Public Health and Preventive Medicine at Monash University. Dr Ioannou has focused her research on extending the science of registries to evaluate and improve the quality of health care in cancer. She was awarded a Victorian Cancer Agency (VCA) Mid-career Fellowship in 2020 and is currently leading her own program of supportive care research for patients with UGI cancer as well as being an academic research fellow on the Upper Gastrointestinal Cancer Registry (UGICR) and the Australian and New Zealand Thyroid Cancer Registry (ANZTCR).