NAACCR Participates in the USCDI+ Cancer Research Data Exchange Summit

On May 8th and 9th, the U.S. Office of the National Coordinator for Health Information Technology (ONC) and other federal agencies, including the National Cancer Institute (NCI) and Centers for Disease Control and Prevention (CDC) hosted the USCDI+ Cancer Data Summit at NCI offices in Shady Grove, MD. The purpose of the Summit was to discuss the opportunities in developing USCDI+ Cancer to address challenges in data exchange for three use cases: clinical trial matching, immune-related adverse events and cancer registries. NAACCR was well represented both in person and virtually by Eric Durbin (KY), Jenna Deniaud (WI), Stephanie Hill, Lori Havener and Karen Knight from NAACCR as well as colleagues from CDC, NCI, the American Joint Committee on Cancer, the National Cancer Registrars Association, and College of American Pathologists (CAP). Other participants included patient advocates, researchers, clinicians, Electronic Health Record (EHR) vendors and data scientists.

Breakout sessions were held for each use case to review potential data elements for the short and long term, current and future workflows and strategies to support adoption. For the cancer registry use case, the group considered data elements deemed essential for early incidence reporting; the data elements were based off of the NAACCR data elements recommended by NAACCR’s Minimum Dataset Task Force. Other data items were considered, including use of the electronic Cancer Protocol checklists from CAP in sending pathology data to the central registry. Because there were a wide range of perspectives in each breakout, cancer surveillance representatives answered a number of questions about cancer surveillance workflows and standards.

Other topics, such as use of Natural Language Processing on narrative text and incentives for adoption were discussed at length. There was an emphasis that structured data is highly preferred but that clinicians will need to gain benefit (e.g. incentives, clinically relevant decision support) for widespread adoption.

ONC is scheduling additional meetings with stakeholders in the next few months to finalize the data elements for each use case, and there will be an opportunity for public comment before final publication.

If you have any questions about this effort, please contact Karen Knight. Learn more about USCDI+ Cancer and other national interoperability initiatives on NAACCR’s Interoperability Resources webpage.