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Enabling 21st Century Applications for Cancer Surveillance through Enhanced Registries and Beyond: A Workshop

Completed

On July 29 and 30, 2024, a planning committee of the National Academies of Sciences, Engineering, and Medicine will organize a public workshop that will examine challenges with the current US system of cancer surveillance, as well as potential opportunities to modernize cancer surveillance programs to facilitate improvements in cancer research and cancer care.

Description

A planning committee of the National Academies of Sciences, Engineering, and Medicine will organize a public workshop that will examine challenges with the current US system of cancer surveillance, as well as potential opportunities to modernize cancer surveillance programs to facilitate improvements in cancer research and cancer care. The workshop will feature invited presentations and panel discussions on topics that may include:

  • Importance of population-based surveillance to understand and address health disparities and identify opportunities to improve the quality of cancer care.
  • The current landscape of US cancer surveillance efforts (e.g., National Program of Cancer Registries, Surveillance, Epidemiology and End Results Program, National Cancer Database of the Commission on Cancer, as well as other hospital and population-based cancer registries).
  • Possible strategies and innovations to address challenges with existing cancer surveillance infrastructure, workforce, data collection methodologies, and data completeness, such as

(1) Inefficient methods for populating data within registry systems, lag time for data availability preventing timely analyses, and insufficient program development and evaluation

(2) Challenges with ascertaining whether a person is experiencing primary cancer diagnosis, cancer recurrence, or a secondary cancer

(3) Lack of detailed information or consistency in reporting data on individual cancers (e.g., biomarkers, mutation status, new variables that should be collected)

(4) Lack of comprehensive treatment information, including surgery, systemic therapies, and radiation therapies

(5) Lack of information about patient comorbidities and patient-reported outcomes

(6) Misalignment of workforce education and training with modern technology and registry data collection methods

(7) Legal challenges that vary across states regarding data deidentification and sharing, and facilitating data linkages

  • Possible consequences of advances in informatics, cancer treatment, and research that rapidly outpace cancer surveillance infrastructure and methodologies, including challenges with timely assessment of the quality of cancer care and the potential to exacerbate disparities in cancer care and patient outcomes.
  • Potential strategies for improving cancer surveillance efforts through interdisciplinary collaboration and lessons learned from other surveillance systems.
  • Potential opportunities to modernize cancer surveillance through appropriate use of technologies such as electronic health record systems, artificial intelligence, cloud-based data collection, and data linkages.

The planning committee will organize the workshop, develop the agenda, select and invite speakers and discussants, and moderate or identify moderators for the discussions. A proceedings of the presentations and discussions at the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines.

Collaborators

Sponsors

American Association for Cancer Research

American Cancer Society

American College of Radiology

American Society of Clinical Oncology

Association of American Cancer Institutes

Association of Community Cancer Centers

Bristol Myers Squibb

Cancer Support Community

Centers for Disease Control and Prevention (CDC)

Flatiron Health

Merck

National Cancer Institute

National Comprehensive Cancer Network

National Institutes of Health

National Patient Advocate Foundation

Novartis

Oncology Nursing Society

Partners In Health

Pfizer Inc.

Sanofi

Society for Immunotherapy of Cancer

Staff

Sharyl Nass

Lead

SNass@nas.edu

Laurene Graig

Lead

LGraig@nas.edu

Francis Amankwah

Lead

FAmankwah@nas.edu

Jennifer Zhu

JZhu@nas.edu

Emma Wickland

EWickland@nas.edu

Anna Adler

AAdler@nas.edu

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