COVID-19 has hit the world and is making its impacts known across all landscapes. The cancer registry and abstraction “world” has been impacted in many ways. Our annual educational summits (NCRA Annual Meeting, NAACCR Annual Meeting, etc.) as well as many other educational conferences have been postponed, canceled, or offered virtually. Some registrars have been sent home to work remotely and some are being furloughed. What will our future look like? We do not know yet but what we do know is it will be the same for some things and vastly different for others.
In the meantime, people diagnosed with cancer are on a waiting list for surgery until facilities are fully operational again. Some of these people are receiving neoadjuvant therapy and some people are having symptoms but cannot (or will not) go into their physician’s office for an examination until they feel it is safe. This may impact patient care as well as patient outcomes.
NAACCR has called upon a group of standard setters to look at issues with cancer, COVID-19, and cancer registry data to see what can be developed for additional data collection fields. This process will undoubtedly take a while as:
- It must be determined what information will be needed for collection
- The data fields and variables for collection must be determined
- The proposed data fields and associated variables must be agreed upon
- These fields and variables must then be programmed into the NAACCR dataset, tested, and proven to be working appropriately
- Software vendors must have time to program the NAACCR dataset into their systems, test it and confirm operations
- Manuals, training, and awareness campaigns must be developed and held
- NCDB, SEER, NPCR as well as other end users must also program the fields and variables and be ready to accept the new data
Is there anything that can be done in real-time while waiting for the standard data fields and variables to be ready? Yes, it will just take courage to step outside of the usual operations and do things a bit differently.
Before you start any new process for registry and COVID-19, meet with key cancer committee members – chairperson, administrative representative, liaison physician, surgeon, medical and radiation oncologists – to see what is important to them for the registry to collect and track. Once you know what is important to your facility and practitioners, you can get started with some COVID-19 specific operations outlined below.
FACILITY-SPECIFIC OR USER-DEFINED FIELDS
Most commercial cancer registry software products have the ability to set up facility-specific or user-defined fields These can be set up to help collect the data that your facility has determined is needed while NAACCR standardized fields are being developed.
Check out the SEER COVID-19 Abstraction Guidelines for additional assistance. These guidelines are for SEER related registries and not required system-wide but do give you some idea of what could be
There would be some set-up time, awareness and training time for the registry staff, and a start-up plan to be developed and implemented. Once these are in place, targeted COVID-19 data could be collected.
If there are specific primaries that your cancer committee wants to have tracked during this process, you can start real-time abstraction, just on these sites, allowing the cancer committee to have real-time data. This data could be looked at weekly, monthly or on a PRN basis rather than waiting 6 – 12 months for retrospective abstraction to be done. If your facility has implemented RQRS, that is a good place to start. If you are already doing near concurrent abstraction, you can just move the timeline up.
THINGS TO PONDER
Early-stage slow-growing cancer may be put into a 2 – 4 month or longer delay for treatment. These primary sites may be collected in real-time, abstracting as much information as is available and using facility defined fields to indicate cases with delayed treatment and cases with immediate treatment. When the facility is ready for open scheduling of surgeries, the registry could run a list of cases with delayed surgery. This will help physicians and the OR team in prioritizing patient scheduling (EX. cStage II breast cancer case may be scheduled for surgery before a cStage 1A ER/PR positive breast cancer.). In a few years, a secondary study could be done using the same delayed vs. immediate surgery data to see if there are differences in outcomes.
There may be patients who are having chemotherapy delayed preserving their immune status. Data collection fields could be developed to help prioritize which patients need to have chemo started as soon as COVID-19 levels out in their community. And later, this data could be analyzed for differences in outcomes. Did patients receiving chemotherapy during the COVID-19 pandemic have a higher mortality rate of COVID-19 than the general population? Did patients with delayed chemo, have poorer outcomes, higher recurrences rate or more aggressive recurrences down the road?
These suggestions could even be given to your cancer committee to seed their thought processes of what is important to them and their medical community for data collection and analyses. Undoubtedly, thoughts must be running through physicians’ brains, keeping them awake at night as they try to balance cancer care and keeping patients free of COVID-19 infection.
There is also a hidden benefit of collecting COVID-19 facility-specific fields and/or real-time data of targeted sites. Cancer registry data will become relevant in REAL-TIME. This may help bring back some furloughed employees, demonstrate that cancer registry data collection and reporting is not something that is done just for accreditation or fulfilling state mandates. Cancer registry data can provide real-time data that can help support effective care during a pandemic or other natural or man-made calamity. Think. Step out of the box. Preserve your career and cancer data importance.
Ciox has an experienced team of remote registrars who offer oncology data services. Contact us at firstname.lastname@example.org.