Cancer Through the Lens of COVID-19 – Webinar Materials

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If you would like to learn more about how the cancer industry is responding to cancer diagnosis and treatment during the COVID-19 pandemic and options for collecting and reporting data related to the impact of COVID-19 on cancer patients’ outcomes, please schedule 15 minute conversation with Melanie Williams Rogan, CTR, Director of Registry Services for ERS, Inc.

Q & A Transcript

Q – How do you think collecting the extra data items relating to COVID will affect the productivity of your abstractors?

A – Karen Mason – Obviously, the more data we that request to be collected by our abstractors then obviously productivity is affected. However, I think that’s why we really wanted to focus on minimizing our data collection. Making it meaningful but minimizing the amount that we were collecting. When we started drawing out and modeling what we wanted to collect, we had a lot more information. And then we realized that this is going to actually push productivity out another 15-20 minutes and we, of course, have to look at our resources and the amount of time that we have to be able to do our abstraction. That’s why we really focused on narrowing down the focus and not duplicating our effort with the rest of the data that’s being collected at MCI. We wanted to make sure we just collected a small amount. Putting the user defined fields inside of the treatment screens, I believed would make that effect very, very minimal. When you’re abstracting already in the case, you’ll be looking at start dates, you’ll be reading through the medical record and so I really think it will be very, very minimal, the effect on productivity.

Q – What type of new follow-up processes will you be implementing to ensure COVID data items are reviewed?

A – Karen Mason – Running reports, selecting a population, running a report so that we can actually look at start times, pushing that into Excel … that’s all going to be vital to make sure that we’re actually capturing this. And then sort of looping back with the abstractors if treatments are delayed and if those data points are not collected.

Q – In your engagement with other registries, what types of information are they collecting? Or are they waiting for the standard setters?

A – Christi Cox – I would say, based on the conversations we’ve had, that most registries are doing something to capture at least minimal COVID data while they wait on the standard setters to finalize those four data items.  The types of info would be capturing any COVID-19 diagnosis, and capturing if the patient’s cancer treatment has been delayed.

Q – Why do you think it is important for the registry to collect this type data versus an external registry?

A – Karen Mason – I think that it will actually really help us at the local level in our own institute. I know we were alerted to the different registries that are starting externally. There is some talk at my facility about participating in those. But I think everybody right now is in sort of a crisis mode, and I’m not sure we even have the resources – staff members are having to self-quarantine or actually call out sick themselves. So it’s almost like we’re in a real crunch for resources. I think that we’re the right people to do it. We are the data experts in cancer data. We understand how to collect data. We understand why we’re collecting the data so I think it’s very important. We will be looking at survival statistics. We’re the people that run those statistics. We’re the people that provide the outcomes data to our physicians and cancer committees. So for us it seems a natural progression that we would want to be the people that are collecting this information.

Q – If NAACCR is planning on introducing four new COVID related data items for version 21 in January, why are you not waiting and going ahead with your own data collection? And what will happen if the data items you are collecting do not match NAACCR’s?

A – Karen Mason – The way I look at is this is 2020. We’re in 2020. We’re in a major global pandemic. I definitely understand how difficult it is at the national level to drive some changes in the registry data set. I definitely do understand the bigger picture. But having said that, I’ve always firmly believed that we at the local level are the people that are collecting all of our data and there’s nothing wrong with us driving these changes ourselves. Honestly, in my own personal opinion, I feel that next year is rather too late, particularly for a large registry like ours. We just will never have the time to go back over our patients’ records that we’re doing now. And so my question would be why wouldn’t we start doing it now? Since we’re right in the middle of the pandemic, now is as good a time as any. And this is the time for us to collect this information If we waited, I think it might be rather too late because we would have to then go back and go over the abstracts we’d already done.

What will happen if the four data points that NAACCR implements in January are different? I would like to think that hopefully some of them will be the same, but if they’re not, there’s no harm. No harm done. I believe we would probably be able to translate and map our information. I’m sort of thinking ahead, thinking we can also use global changes. We can map our current data collection to when we started. Obviously, when that comes into play next year we will collect those four data points whatever they are, but it may be that we continue to collect our own if that’s not being collected. But either way, behind the scenes we can definitely map our answers and our data to the newer data points once we find out what those are.

Q – With the SEER guidelines in collecting COVID data in text, I realize this is a requirement of SEER registries? Do you see non-SEER registries collecting this information as well?

A – Christi Cox – This is only required for hospital registries in SEER states, and required for SEER contracted central registries. It can be collected by any hospital and submitted to your state, but I would recommend checking with your central registry to see if they are going to be doing anything with it, since non-SEER states won’t be required to, they may not.  The data that goes in those text fields is VERY specific, the use of the correct acronyms, with proper dates and the proper arrangement is vital to those text entries being retrievable and useful.  It’s not just a matter of noting “COVID positive” or “treatment delayed” etc, so abstractors are going to spend a substantial amount of time referring back to the instructions and documenting these things, so if your state isn’t going to participate, I would definitely not collect it in that manner.