Ashika Maharaj, BPharm PhD, and Liane Ioannou, BSC(Hons) PhD
2023 Measuring What Matters Symposium Co-Chairs

We are excited to host the upcoming 2023 Measuring What Matters Symposium (MWM), which will focus on MWM in Oncology: Translating research into clinical practice using clinical registries.

Cancer is a leading cause of morbidity and mortality globally. High quality health care relies on the provision of health services in a safe and timely manner that increase the likelihood of desired health outcomes for patients with cancer. These health services are informed by current evidence-based, best practice guidelines. However, clinical measures often do not consider what is important to patients, such as a patient’s wellbeing, functional status and health related quality of life. These are best evaluated using patient-reported outcome measures (PROMs).

The implementation of PROMs in oncology has been a well-researched area in clinical trials and increasingly so in clinical practice. This symposium will address how the collection and evaluation of routine PRO data are being used within registries to address the needs of patients with cancer and improve or benchmark quality of care. Clinical registries, including clinical quality registries, play an important role as:

  1. a clinical and research tool, to measure quality of care that reflects compliance with agreed best practice, based on the existing evidence-base;
  2. an implementation tool, to assist in translating knowledge into practice by benchmarking performance and providing regular feedback to clinicians and hospitals on their performance, according to best practice and compared to their peers.

The objectives of the symposium are to develop a shared understanding on the role of clinical registries in oncology; how clinical and patient-reported quality measures are used to improve quality of care in different countries; and how registries can be used to integrate PROs data into clinical practice.

The symposium will begin with an overview of the model applied in oncology clinical quality registries in an Australian setting, presented by Prof. John Zalcberg, Head of the Cancer Research Program at Monash University. Dr. Rasa Ruseckaite will discuss a conceptual framework for PROMs inclusion in clinical registries, and Dr. Anna Stecksén will give us an insight into the use of PROMs within a national setting from Sweden.

Session two will explore international examples of PROMs in oncology clinical registries, with a mix of speakers from population-based or quality registries. We begin with Dr. Kelly de Ligt from the Netherlands Cancer Institute, who will give an overview of the national, regional and local levels of PROMs use within registries in the Netherlands. We then move from Europe to the United States with Dr. Roxanne Jensen from the National Cancer Institute and Dr. Belinda King-Kallimanis from LUNGevity Foundation. Dr. Jensen will present on the Surveillance Epidemiology and End Results (SEER) cancer registry PROs data collected using the Medicare Health Outcomes Survey (MHOS). Dr. King-Kallimanis will delve into the consumer voice for decision-making through her work with the foundation on PROMs.

The final sessions will include current translational projects dedicated to improving outcomes for patients with cancer in real-time. BroSupPORT, presented by Prof. Jeremy Millar, and PROpatient, presented by co-chair Dr. Liane Ioannou, are translational projects that monitor patient symptoms using PROMs and provide feedback to clinicians and patients in real-time to manage these symptoms and, hence, improve patient outcomes. To complete the symposium, Prof. Robyn Langham, the chief medical adviser to the Therapeutics Goods Administration, Australia, will provide an insight into clinical registries from a regulatory perspective with the inclusion of PROMs.

We invite you to register for this MWM symposium today! Registration is now open on the ISOQOL e-learning platform. The symposium recordings will also be available to view on-demand if you are unable to join us for the live symposium on 18 July 2023.

Our sincere thanks to all speakers for their dedication and time to make this 2023 MWM possible. A special thanks to ISOQOL staff members, especially Charise Milan and Joshua Dieball, for all their wonderful technical support and organization.

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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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.