Navigating the Future of Your Cancer Program
A Partnership Between Your Navigation Program and the Cancer Registry
Q & A Transcript
Q – We seem to struggle with the CoC Standard 9.1 identifying eligible cases for clinical trial accrual. What do you suggest that would help our initiatives?
Melanie Rogan: Our software has fields to monitor eligibility and participation, clinical trial accrual dates, study type, trial name, following status. These data items can be paired with other study criteria such as cancer site, stage, and other criteria to identify eligible cases as soon as this data is entered in the registry. And when a registry uses any of our automated interfaces that we discussed during the presentation, the cases are coming into the registry in real time, which makes looking for eligible cases even easier.
This is a really important concept for navigators to be involved early on in the process because their ability to identify individuals for trials in their respective areas is really important and especially to understand the populations that patients come from and the need for full discussion to enhance accruals in certain populations and this is what I think is wonderful about interfacing the navigation with registry data.
Since participation in tissue and biobanks may satisfy Standard 9.1 (Clinical Trials), is information regarding tissue banking captured in the CRStar abstract?
Dr. Greene: I have found that in my survey work in my visits to institutions that many institutions have not taken advantage of having tissue banking and tissue repositories as a mechanism for increasing accruals. The other thing that I’d like to mention is that this is one of the areas that in our CRStar software is highlighted so if you have a patient who is sent to a biorepository or a tissue bank, or has their pathology sent to it, this will be identified and captured in the software. So, I’m happy to say that this really does support 9.1 very, very well.
The 2020 CoC Standards do not require a Community Needs Assessment (CNA). Could a CNA be used to select a barrier in Standard 8.1?
Dr. Greene: Yes. Although the Community Needs Assessments are not needed either in looking at screening, prevention studies or the barriers and what our navigators work with, I think they’re a valuable tool so I would urge everyone to think about doing a community needs assessment. It’s similar to what Melanie was talking about regarding survivorship care plans. They’re not required but I feel that many institutions have done well with their survivorship care plans and they’ll be one of the three programmatic areas per year that your survivorship program will have to be involved in. I think for many institutions, the community needs assessment is very valuable, and I would urge them to be used.
Do you have any type of mechanism that would allow navigators to contact and follow patients that are enrolled in a navigation process?
Melanie Rogan: We have a follow-up module that assists cancer registrars in creating follow-up lists and letters to patients for annual follow-up purposes. In addition to those letters, the software allows users to create their own letters or even custom forms that can be generated for patients and family members for a variety of purposes.
We developed a SCP, but the data has to be manually entered. You mentioned this data can be filled in from the registry. Is there a way that the navigators can make changes to that imported data? Sometimes, cancer registry terminology may be a little daunting for a patient or caregiver.
Melanie Rogan: Great question! As we mentioned, 95% of the SCP templates are auto filled. However, the SCP can be modified on screen before printing. And the great thing is that whatever is modified by the navigator does not alter any information in the abstract. It also contains follow-up appointment and surveillance fields, possible side effects and other things to look out for that the navigator can fill in.
You mentioned the registry could send lists of newly diagnosed patients for possible enrollment as soon as they were diagnosed but before they were completed. How complete is that data or what data elements are included at first diagnosis?
Melanie Rogan: Newly diagnosed cases are referred to in the registry as suspense cases. These are cases that have a confirmed diagnosis of cancer. Generally, these cases will include all demographic data for the patient, all geographical information, sex, race, and ethnicity. It will also include date of diagnosis, primary cancer site, sometimes comorbidities and complications, and if coming come a pathology interface, it will include the final diagnosis information or even sometimes the entire path report, depending on how the interface has been configured. And then also, depending on how concurrent the registry is with their abstracting, they might have already entered some staging information, diagnostic workup info and even some treatment. What you get from the registry depends on the timing of the ask. These early diagnosed cases can be helpful in both identifying patients early for navigation enrollment as well as clinical trial enrollment.
Schedule a Dialogue with Melanie Rogan
Please schedule time with Melanie Rogan, CTR, Director, Registry Services, for a one-on-one session to learn more about how the Registry can support Patient Navigation and more
For COC Accreditation, are the CP3R metrics still required for review?
Dr. Greene: That’s a great question! Some of you who have been involved in the CoC for a while know that the CP3R programs were basically breast and colorectal metrics. Those were sunset when the new 2020 standards came in January 2020. They have all been incorporated in what we’ve talked about with the Rapid Cancer Reporting System, so the same metrics are being looked at but under a different name. There’s no more CP3R program, it’s all under RCRS and as I mentioned there are 11 different metrics, we use but probably will be more in the future.
We do have a challenge finding recurrence and death information. You mentioned that the registry can provide outcome information, but I thought I heard you say this is only done annually? I am not sure how helpful that would be. Can you explain?
Melanie Rogan: Registries are required to follow patients annually, but follow-up is actually being constantly performed. Each month, the registry has processes in place to attempt to follow patients in that month since their last contact with the patient from that same month the year before. For example, in August of 2021, I would be trying to follow patients with whom my last contact was in August of 2020. And then the following month would be September 2020, October 2020, etc. And the registry database is being updated as soon as that information is found. In addition, when any of our automated interfaces are used, in addition to adding new cases, outcomes information is also imported for existing patients as well. So, follow-up is one of those processes constantly in motion.
Can reports generated in CRStar be used as attachments in Cancer Committee minutes?
Dr. Greene: This is a great question! I think if you’ll remember, some of those beautiful illustrations that Melanie just showed that can be generated, those are great to put right into the minutes. As a site visitor for CoC Accreditation programs, I have to read all the minutes and when I see attachments that come from the registry, I’m very excited. And I think that they’re beautiful illustrations and so yes, you can put those directly into the minutes which enhances what gets discussed at cancer committee.
I have two questions. First, you mentioned that a registry could grant access to the software to collect and monitor some of the fields that would be helpful to them and also run their own reports and SCPs. Is there a way I could give them access to just those areas that they need? And my second question is if we decided to allow access to a navigator, would your support staff be available to help with their training?
Melanie Rogan: Great questions and the answer to both questions is yes. The system administrator of each of our clients have ability to make certain screens or even entire modules available and unavailable to individual users. In addition, you can give certain users read-only access. The answer to the second question is absolutely, we would be happy to. You would just need to contact us through our support helpdesk to schedule!
If a patient is enrolled in 2 different trials under standard 9.1, can the patient be counted in the numerator twice?
Dr. Greene: Well, this is great question because remember there are many different clinical trials so you could have one patient accrued to more than one trial and they can be counted twice in the numerator if they are in two trials. What you can’t do is to count them if they’re in a subset or a different arm of the same trial. So, if they’re in two separate trials, they can be counted as two separate accruals.