This is the text of a letter that Karen Yatcilla and I sent to NAACCR, CoC, SEER, and NCRA:
“We are cancer registrars at a COC-accredited comprehensive community cancer center. We have completed our December 2017 casefinding and can begin abstracting 2018 cases. However, the standard setters have yet to finalize the changes to be implemented in January 2018, let alone send them to the software vendors. How, then, are we to do our work? Although standard setters seem to assume all cancer registries work on a six-month time lag – and indeed, a six-month time lag may not matter for your purposes – in our real-world clinical setting, our data are most valuable when most current. (And indeed, the CoC seems to be moving in the direction of concurrent reporting.)
We have worked hard to demonstrate the integrity of our profession and the importance of the cancer registry within our facility, but it seems that the standard setters (NAACCR, NCRA, SEER, CoC) are doing their best to undermine our progress. How can it be that you “don’t know the magnitude and scope of changes” that are to occur? While standard setters are moving at a glacial pace, private organizations are rapidly taking over real-world cancer data collection. Cancer registries may well become obsolete if our standard setters don’t adapt to 21st-century clinical needs.
The quality of cancer data depends on the people who abstract the medical record into a usable format: cancer registrars. It is abominable that the standard setters are not providing cancer registries with the tools they need to do their work.”