ListServ

NAACCR encourages the cancer surveillance community to participate in an upcoming listening session hosted by the US Office of the National Coordinator for Health Information Technology (ONC). This will be an opportunity to discuss the Cancer Registry use case and data element list developed by a collaboration between NAACCR, the ONC, and other cancer surveillance partners.

See the announcement below for how to participate. For more background on this project and NAACCR's involvement, check out the recent NAACCR Narrative Article.

Join Us for a Cancer Registry Listening Session 

ASTP/ONC and NCI invites you to participate in an upcoming listening session focused on the Cancer Registry use case and USCDI+ Cancer Registry data element list published on July 23rd. This session will provide an opportunity to discuss the importance and ease of collection of the data elements, the potential burden of sharing them electronically, and the impact on the future flow of data as we gather feedback from stakeholders like you. 

Date:  August 29, 2024 

Time:  2 – 3pm ET 

Location: https://nci.rev.vbrick.com/#/webcasts/uscdicancerregistrieslisteningsession 

Cancer Registry Overview 

The scope of this use case includes the Surveillance, Epidemiology, and End Results (SEER) program, the Centers for Disease Control and Prevention/National Program of Cancer Registries (CDC/NPCR) state cancer registries, and the cancer registry standards organization, North American Association of Central Cancer Registries (NAACCR). Together, these entities play a critical role in understanding the burden of cancer in the US related to cancer incidence, first course of treatment patterns, mortality, and survival. 

Currently, there are delays in obtaining data from these sources, with available data often up to 3 years behind the current year. The objective of this use case is to enhance the efficiency and timeliness of the collection of cancer registry data by identifying standards (e.g., FHIR, mCODE, etc.) to efficiently extract and/or collect cancer registry data directly from EHRs and pathology labs at a sufficient level of granularity. This data must be interoperable with the cancer clinical, public health, and research communities. The USCDI+ Cancer use case will define the data standards and models needed for identifying and extracting required data, as well as support current data sharing and linkage approaches for cancer registry data via SEER and CDC/NPCR. 

With the advent of real-time reporting, capturing a minimum dataset through a FHIR query as early as possible is crucial. This dataset must meet certain quality standards to make the information usable. 

This listening session will cover the cancer registry data flow and the points of exchange of data, which are critical for understanding and optimizing the interoperability and timeliness of data sharing. We will review the published data element list and discuss the cancer registry framing questions related to data element completeness, implementation, and real-time reporting. 

How to Participate: 

To join the listening session, please register here. If you have any questions, please contact us at USCDI.Plus@hhs.gov.  

In the meantime, visit the USCDI+ platform to review and provide feedback to the recently published cancer registry data element list during the 60-day comment period.  

We look forward to your valuable input and active participation in improving cancer registry data collection and interoperability. 

USCDI+ Cancer Team