A Deeper Dive into Cancer Registries

• Understanding Cancer Registries (Part 1) Podcast Episode
• More information about the CAP Cancer Protocols
• For questions, please email us at CancerProtocols@cap.org.

Becca Battisfore:

Welcome to the latest edition of the College of American Pathologists' CAPcast. I'm Becca Battisfore, Content Specialist with the CAP. On this episode, I'm joined by Dr. Lara Harik, Peggy Adamo, and Andrea Sipin-Baliwas, who will discuss cancer registries.

This is the second part of a conversation about how cancer registries improve patient outcomes using the CAP'S Cancer Protocols. The first installment, we talked about the basics of cancer registries and how pathologists contribute to registry data. It gives a great overview and sets the foundation for today's conversation, so please check out part one. The link to that will be in the episode description.

But in case you haven't heard part one yet, I'll give a little background. The CAP's Cancer Protocols help ensure that all pathology reports contain the necessary data elements for optimal patient care. By requiring specific data elements, synoptic reporting increases accuracy and communicates findings in a clear, standardized format to health officials, researchers, and clinicians. Cancer registries depend on the Protocols for accurate standardized data collection. The curated data within a cancer registry provides essential information to better monitor and advance cancer treatments, conduct research, and improve cancer prevention and screening programs.

Before we get into the questions, let's learn more about our guests. Dr. Harik, would you like to introduce yourself?

Dr. Lara Harik:

Yes. Thank you so much, Becca. My name is Lara Harik. I'm an associate professor in the Department of Pathology and Laboratory Medicine at Emory University School of Medicine in Atlanta, Georgia. I also serve there at Emory University Hospital as the medical director for the clinical Laboratories Hospital service line. I'm also the vice chair of the CAP Cancer Committee.

Becca Battisfore:

Thank you. Peggy?

Peggy Adamo:

Hi. I'm a public health analyst with the surveillance research program at NCI, which is where the Surveillance, Epidemiology, and End Results, or SEER program resides. I am also the inbound liaison from NCI SEER to the CAP Pathology Electronic Reporting, or PERT committee, and I've been a cancer registrar for 27 years.

Becca Battisfore:

Great. Thank you. And last but not least, Andrea.

Andrea Sipin-Baliwas:

Hi, Becca. Hi everyone. My name is Andrea Sipin-Baliwas and I am the director of Registry Operations for the Los Angeles Cancer Surveillance Program. We are a population-based cancer registry responsible for reporting in Los Angeles County, and we are one of the three regional registries under the California Cancer Registry.

We're also part of the National Cancer Institute funded SEER program. Among other roles, I serve as an NCRA liaison for one of our partner organizations, the North American Association for Central Cancer Registries. Thanks so much for having me.

Becca Battisfore:

Thank you all for joining the podcast today. Dr. Harik, I'll let you take it from here.

Dr. Lara Harik:

Thank you so much, Becca, and welcome Peggy and Andrea. It's a pleasure to have you here with us and we are really looking forward to learn more about the cancer registries. In the first episode, Mildred shared with us that Cancer Protocols, or synoptic worksheet elements, are incorporated into the registries. Can you talk a little bit more about how these synoptic worksheet elements are incorporated into the registries?

Peggy Adamo:

Sure, I can take that one. This is Peggy. Many of the tumor characteristics in the CAP checklist are collected and maintained in the cancer registry database, such as size of the primary tumor, lymphovascular invasion, and surgical margin status to name a few. And having a standardized source for this information available to the cancer registrar is so valuable. The synoptic worksheets reduce the amount of interpretation, which leads to more consistent and accurate data.

Dr. Lara Harik:

Thank you so much, Peggy. Can you also tell us a little bit more if there are other data that are also incorporated in the cancer registries? For example, do you incorporate any data from clinical partners? What type of data do you incorporate in addition to pathology data? And what type of data do these institutions or bodies share with you?

Peggy Adamo:

Based on state or federal reporting laws, cancer is a reportable disease and requires that all healthcare facilities, physicians, dentists, labs, and other healthcare providers report cancer to the population-based registry in their area. Data reported to cancer registries includes the patient demographics, information about the cancer diagnostics, and the treatment information.

Dr. Lara Harik:

Thanks so much, Peggy. And last question for you, Peggy, is what are some of the various downstream uses of the data that is collected in the cancer registries?

Peggy Adamo:

Oh, there's a ton of use for this data. Data are used to identify cancer incidents, patterns and trends, to develop cancer prevention and cancer control programs, and to improve patient care.

The annual report to the nation on the status of cancer is jointly issued by the American Cancer Society, the Centers for Disease Control and Prevention, the North American Association of Central Cancer Registries, and the National Cancer Institute.

This annual report is an update of rates for new cancers and deaths. It includes long-term trends since 2001 and trends for the most recent five years of data for incidence in mortality. All of the data in that report began with cancer registry data. And that's just one example.

Dr. Lara Harik:

That's impressive. Andrea, I would love to ask you, how do we ensure the integrity of the registry data capture over time, as we know histologic subtype, nomenclatures, as well as state change over time. How do we ensure this integrity?

Andrea Sipin-Baliwas:

Thanks for asking that question, because this has really been a focus of our work, especially in more recent years as electronic reporting of pathology has taken over. We really need to ensure we're working with all of our partners and our standard setters to make sure all the data, the appropriate data is captured.

And in Los Angeles, we have been collecting paper and electronic pathology data for quite some time, which accompany our incident cancer case reporting. But especially in 2019, we had assembly bill 2325 go into effect, which essentially requires pathologists such as yourself who diagnose cancer to provide their pathology reports to the state electronically.

And I would say that's when the floodgates opened for us, and we began to receive more electronic pathology data than ever before. And so from its implementation, we have also learned that active monitoring and communication with reporting entities and their teams made up of pathology departments, IT units, admin registrars, so many people, is absolutely key to communicate with them to ensure integrity of the registry data capture over time, short term and over time.

And so just keeping your eyes on what's coming in is crucial. Now, I would say that this is true for electronic reporting, not only of pathology reports and its data elements, but also in reporting incident cancer cases in the form of what we call abstract because both types of reporting can and often experience kinks in transmission, unfortunately. But that's the reality of what we're working with.

So I just want to emphasize that conducting quality review and establishing a solid feedback mechanism for correction is needed. And the beauty of synoptic reporting, as with CAP's Cancer Protocols, is that it leaves less room for error through its standardized approach to reporting.

Dr. Lara Harik:

Thank you so much and thank you for the shoutout for the CAP Cancer Protocols. Along those lines, what are some of the biggest challenges that the cancer registrars are currently facing?

Andrea Sipin-Baliwas:

That's a heavy question, but I'd be happy to answer. As you know, cancer diagnoses and treatment changes constantly and our work does too. And so that ensures that our data stay relevant for research and improving outcomes for patients.

Now, I would say the challenge is cancer registrars must constantly learn and understand the new and revised data elements for abstracting. So this also means that our databases that capture the hundreds of data fields per cancer site are constantly updating. And with that comes a learning curve of course, but luckily, we have wonderful teams of programmers who support our systems in our field and working closely together, despite sometimes speaking different languages, makes adapting to that easier.

And to add to that, I would say there is also a demand for collecting and abstracting data faster while maintaining a high level of accuracy and completeness. In Los Angeles, for example, we have over 80 hospitals ranging from incident cancer caseloads of less than 10 to over 7,000 annually per hospital. And reporting each of those cases is only made possible by people who deeply care about their work.

In addition to that, central cancer registries are also responsible for reporting of cancer cases from physician and non-hospital facilities. And so there are countless numbers of those in our catchment area. So our reporting landscape is always changing, not only in Los Angeles, not only in California, but nationwide. And keeping up with who is reporting and who needs to report is one of the challenges that we face.

Couple that with competing priorities and unfortunately limited resources at times, let's just say we're always on our toes. There's never an easy day in office, but we love what we do. And so because of this, I know that cancer registrars are so grateful for NCRA for their efforts to change our credential name, which is ongoing now. We'll learn soon what that is, but it'll better align with our current cancer registry professional practice terminology, and as I mentioned, just our evolving scope of practice as registrars.

Dr. Lara Harik:

That is great. Andrea, last question to you. What are some future opportunities for cancer registries that you think would be on the horizon?

Andrea Sipin-Baliwas:

I think our shared goal as cancer registries, no matter what kind of registry you are, whether you're a hospital, central, you're at the state or federal level, we all aim to collect, disseminate, analyze, and utilize data for epidemiology and public health purposes.

And so with that, we are uniquely positioned to develop and support emerging technologies to further our mission. I alluded to earlier needing to collect data faster, and that's because there's a demand for sharing our data with researchers and clinicians in real, or what we call near real time. And so consequently, our cancer surveillance community is working to shorten the data collection timelines to really help guide more timely implementation of evidence-based interventions and research.

And so while it's a challenging field to work in, to say simply, I know my colleagues would agree that it is fulfilling and it pushes our creative boundaries to accomplish our day-to-day work in sometimes very unexpected ways.

Dr. Lara Harik:

Thank you so much. I would love to ask a question to both of you. Are there any opportunities for pathologists to be able to partner with cancer registry personnel and members and take a look at the data and maybe work on population studies or other academic endeavors that could advance the field of cancer?

Peggy Adamo:

Sure. I think so. I think the partnership between cancer registries and cancer registrars and pathologists is a super valuable one and should be utilized at every possible opportunity. So I would encourage pathologists to, if you're in a hospital setting, reach out to your cancer registry and get to know the registrars and let them get to know you. And yeah, great things can happen I think with a partnership like that.

Andrea Sipin-Baliwas:

I definitely agree with Peggy. A lot of our work is dependent on pathology reports and the knowledge that pathologists bring. And so partnering with you all is really important to move our field forward, because as we better understand each other, our missions, our goals, our changing work scopes, then we can only better support each other.

And I know, as there's discussion about capturing recurrence now. Traditionally, we've only always captured incident cancer reporting and now there's pressures to, understandably, pressures to capture recurrence data. I think we can only do that with the help of physicians and pathologists alike so that we can understand the documentation better and capture it in our abstracts as best we can.

Dr. Lara Harik:

I know I have enjoyed receiving calls from the Hospital Cancer Registry asking me to clarify some of my diagnoses. And I think now that I know all of this background, I think I appreciate more when they reach out to me so that we can make sure that the data is adequate and accurate.

We have certainly enjoyed, in the CAP Cancer Committee, we have enjoyed having NCRA and other registry liaisons, and we rely on them heavily for information when needed. Any final thoughts, Peggy or Andrea?

Peggy Adamo:

I'll just say thank you for having me today. It's just been a great pleasure to participate.

Dr. Lara Harik:

Thank you for joining us. It's been a pleasure to get to know you and to learn more from you on cancer registries.

Andrea Sipin-Baliwas:

Thank you. And I would just say I appreciate everyone's collaboration to ensure we meet our shared goals. I mean, it's only possible because we work together, so I appreciate everyone.

Dr. Lara Harik:

Becca, I'll give the mic back to you.

Becca Battisfore:

Thank you. And thank you all for joining the podcast to talk about this really important topic, cancer registries. And I want to thank you all for listening to this CAPcast. For questions about cancer registries and the Cancer Protocols, please email at CancerProtocols@cap.org. For more information about the CAP, visit CAP.org.

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