April 9, 2012
Cancer Registrars Tackle Tough Assignments
By Susan Chapman
For The Record
Vol. 24 No. 7 P. 14
Faced with myriad rules and regulations as well as evolving technology, today’s cancer registrars are being asked to do more than ever.
Back in 1926, the first cancer registry was established at Yale-New Haven Hospital in Connecticut, where dedicated staff went about the business of collecting, managing, and analyzing data on individuals diagnosed with malignant disease. Today, cancer registries, an integral component of every healthcare system, play a vital role in deepening our understanding of cancer and its corresponding research and treatment.
According to the National Cancer Registrars Association, cancer registries fall into three general categories: those within healthcare institutions that gather and maintain information on individuals who are diagnosed or treated for cancer at that facility; central registries, which collect and maintain cancer information within specific locales; and special purpose registries, which focus on collecting data for a particular type of cancer.
Cancer registries typically collect patient demographics, medical histories, diagnoses, types of cancer, treatment and therapies, and follow-up care, including any ongoing treatment and disease recurrence. These data are then reported to the state according to each one’s respective reporting laws. States, in turn, report their data to the National Cancer Data Base (NCDB), which generates national cancer statistics and reports. Throughout the process, all patient information is kept confidential per HIPAA requirements, with no identifiers used in analysis or publication.
Serving as an important public health tool, cancer registries enable public health officials to make decisions on activities such as research funding allocation, screening program placement, and educational program development. Further, the information is important to understanding treatment effectiveness and determining cancer occurrence and survival rates.
Registrars’ Roles in Care
Collaborating with physicians, researchers, and health administrators, cancer registrars oversee registry data management at various healthcare facilities. Cancer registrars ensure the information’s veracity and that all reporting is done in compliance with state and federal standards.
“We assist cancer programs with Commission on Cancer [CoC] accreditation, part of the American College of Surgeons [ACS],” says Ilona Gyerman, RHIT, CTR, director of CHAMPS Oncology’s quality & informatics division. “Each CoC-accredited facility is responsible for collecting data on anyone who is diagnosed or treated for cancer while meeting the CoC’s patient-centered, multidiscipline standards. The information collected is then reported to the state and the NCDB.”
States and the NCDB add another layer to the data’s depth. “The state is an incident registry, which is important because it can identify pockets of cancer. The NCDB provides comparative data for treatment,” notes Gyerman. “Additionally, the analysis of its information allows us to see if our facility is on target for national quality measures. The NCDB gives us such things as survival rates as a benchmark for our physicians.”
Registrars generally collect data through coding summary sheets and pathology reports and from consults between radiation and medical oncologists, other facilities, and patients. Consults in particular have proven to be valuable resources.
“The summary from consults tends to be one of our best sources,” says Stacy Yates, CTR, president of the Oncology Registrars Association of New Jersey and oncology data coordinator for Robert Wood Johnson University Hospital in Hamilton, New Jersey. “From that, we can obtain a list of physicians who have seen the patient, which makes it much easier for us to gather complete information.”
By collecting data from physicians, facilities can avoid bothering patients. “Some facilities do not contact the patient. We try not to do that unless we absolutely have to because it’s an upsetting time,” Yates says. “If we do contact the patient, we generally just ask for the name of the facility where he [or she] was seen and call that facility to finish the research.”
Gathering and keeping tabs on cancer information can be quite involving, says Shondel Hansen, RHIT, CTR, a cancer registrar at Aspirus Regional Cancer Center in Wisconsin. “We collect information regarding the entire cancer treatment, anything that has to do with cancer, from diagnosis through treatments—surgery, chemotherapy, radiation, hormone—per state requirements,” she says. “We also must follow all analytic patients, meaning that they were diagnosed and/or treated at our facility or diagnosed elsewhere and came to our facility for treatment. We attempt to follow patients if they move, which can sometimes be a challenge and time consuming.”
Cancer registrars agree that it’s important to keep open the lines of communication between different facilities.
“We contact other facilities either by phone or e-mail. We need information quickly from one another on a regular basis, so it’s good if we get to know one another,” says Yates. “In New Jersey, there are two one-day continuing education seminars and one two-day seminar each year. Those events bring together registrars from New Jersey, New York, and Pennsylvania, and that gives us all opportunities to meet and build solid working relationships.”
By law, cancer registrars must report to their respective states within six months of their facility’s initial contact with a patient. Hospitals also want to use the information concurrently, which means that registrars must coordinate all data and actively monitor the information for quality.
In September 2011, the ACS launched the National Quality Forum (NQF)-endorsed Rapid Quality Reporting System (RQRS), a pilot program for all CoC-accredited facilities which the ACS described as “a reporting and quality improvement tool which provides real clinical time assessment of hospital level adherence to NQF-endorsed quality of cancer care measures for breast and colorectal cancers.”
The Web-based reporting system is designed to assist with local-level care coordination for patients with these types of cancers at facilities participating in the pilot program.
The ACS noted that in field testing performed over a two-year period at 65 CoC-accredited cancer programs, the RQRS positively impacted and promoted “the quality of care for breast and colorectal cancer patients.”
“Information gathered using RQRS is valuable,” Gyerman says. “For example, it lets us monitor cancer care in real time for breast and colorectal cancer patients. This enables us to access compliance with the National Quality Forum-endorsed measures and ultimately support quality patient care.”
In general, the information cancer registrars abstract is beneficial to physicians as they actively treat patients. “When we abstract data, we cross-check staging with what the Collaborative Staging System derives against what the physician documents,” Hansen says. “If there is a discrepancy, we contact the physician when possible. If there is an error, we make sure staging is documented accurately because it could impact treatment, and it also affects our records.”
Along with data collection, abstracting, and reporting, cancer registrars have additional responsibilities. “We have to organize and host a tumor or cancer board conference,” Yates says. “The frequency with which that conference takes place depends on the type of facility. For instance, at our facility, the tumor board meets once per week.”
During these conferences, a physician presents a current case, and pathologists, oncologists, radiologists, and surgeons discuss National Comprehensive Cancer Network guidelines and treatment options. “The American College of Surgeons Commission on Cancer defines standards, and the cancer committee monitors and reports these conferences annually,” Yates says. “From these conferences, we have to create a grid to demonstrate that we’re meeting the standards.”
Beyond that, Yates notes that Robert Wood Johnson’s cancer committee holds quarterly meetings. During these gatherings, the committee addresses different performance indicators and quality studies. In addition, it monitors all cancer registry functions, and the quality control coordinator, usually a physician, reviews data for accuracy.
Hurdles to Overcome
With a vast amount of data to collect and abstract on top of a wide range of other responsibilities, cancer registrars face numerous challenges.
For example, tracking patients who have been diagnosed and/or treated at their facilities can get complicated. “We have to send follow-up letters each year. Even if a patient is five years clean, that individual could have a recurrence. So we don’t just follow up with patients until they are disease free; we follow them until they expire,” Yates explains. “And if a patient cannot be located or is no longer being seen, then we have an unknown classification, which is something we want to avoid.”
Additionally, registrars stress the importance of ensuring that information is as clean and error free as possible before submitting it to the state and the NCDB. They note that facilities are experiencing an increased demand for more current data and that any changes in software, coding, and requirements mean that they must stay up-to-date on the latest technology and guidelines.
Plus, cancer registries are often short-staffed. “There’s a need for quality data, and cancer registrars want to provide it. But we need the staffing to do it,” Hansen says. “Traditionally, staffing in cancer registries has been low. It’s a little-known field and a very detail-oriented job, so everyone isn’t suited to it.”
How to Be More Efficient
Keeping up with all the changes swirling around cancer registry and healthcare as a whole is a Herculean task, but there are solutions to help registrars maintain their sanity.
“Stay ahead of your deadlines as much as possible,” Gyerman recommends. “There are always new things that come up, new reporting that must be done, so it’s important to remain as ahead of schedule as you can. Also, identify cases that need further treatment and check on them regularly. We always want a complete and accurate picture of the treatment history.”
Developing solid working relationships with coworkers is always a sound strategy, Yates says. “It’s always good when we work in close proximity to the physicians,” she says. “But when we don’t have that advantage, it’s good when the physicians are aware of our needs so that when we reach out to them, we get a response. The only way to avoid classifying a case as ‘unknown’ is to pursue the information. Oftentimes, to get the information we need, we have to do a lot of detective work. For example, we have to scan the discharge summary to see if the patient had a recurrence, and then we can track any missing information from that point. That can be very labor intensive.”
Hansen says technology developers need to step up their game. “Right now,” she says, “our reports aren’t always easy to run. It would be nice if our systems connected, if we could pull our information from a central location in fewer steps.”
Yates would like to see interoperability become a reality. “What would be ideal is if we had shared databases with physicians,” she says. “If a physician is on staff at a local hospital, the registry could share information with that physician. Or if that’s not possible, making sure that the cancer registry is copied on all follow-up materials would also be very helpful.”
“Technology can be very helpful; automation makes [cancer registry] efficient,” Gyerman adds. “I think it’s very important to get to know the IT staff. They help cancer programs find ways to automate case finding, for instance, and help make the important work cancer registries do more efficient for their facilities and the broader field of cancer treatment and research.”
— Susan Chapman is a Los Angeles-based writer and author.