Up to Speed in the Cancer Registry

Vol. 15 •Issue 24 • Page 21
Up to Speed in the Cancer Registry

A hospital cancer registry can provide a wealth of information if it’s staffed properly and collecting sufficient data.

Cynthia L. Dryer, CTR, remembered her experience working in a cancer registry, what she called “the best kept secret” of the hospital. “It was our wedding anniversary,” she recalled. “My husband sent flowers to the hospital and the woman at the front desk said, ‘I don’t even know if we have a cancer registry.’ This was the hospital receptionist! Three registrars, 1,200+ cases and they didn’t even know we existed.”

Untapped Resources

This lack of familiarity surrounding the cancer registry is a common one. It’s probably why a number of facilities outsource the function entirely, speculated Carol Hahn Johnson, CTR, manager, quality improvement, Cancer Statistics Branch, Division of Cancer Control and Population Science at the National Cancer Institute (NCI). Admittedly, “We’re in an era of outsourcing,” said Johnson. But shipping the data off without knowing what it means is unfortunate, she added. “The cancer registry seems to be a dark hole as far as people understanding what it could do. There’s a lot of ways you can use the information you collect.”

For facilities that opt to keep the function in-house, Johnson stressed the importance of establishing what the organization needs to collect, and then staffing from there.

“One of the biggest mistakes people make is trying to define the needs of a cancer registry based only on abstracting,” said Johnson. By one registry estimation she made, the registrars only spent 38 percent of their time abstracting. Another 38 percent comprised follow-up work, 12 percent was allocated to tumor conferences and the infamous “other” made up the remaining 12 percent.

A Patchwork of Needs

Yet in Johnson’s experience, the big question executives ask when determining registry resource needs is: “How many cases should an abstractor be able to abstract in a day/week/month/year?” Another common question related to registry staffing is: “Can’t the National Cancer Registrars Association or the SEER (Surveillance Epidemiology and End Result) program give us a number?” Joked Johnson, “I was never asked, ‘Can you use an extra FTE (full-time equivalent)?’”

Unfortunately, there is no foolproof formula to calculate staff needs for a hospital cancer registry. Part of the problem stems from the diverse data sets hospitals are responsible to collect.

“It doesn’t vary state to state so much as affiliation to affiliation,” Johnson explained. “If the hospital reports only to the state under the National Program of Cancer Registries (NPCR), for example, they abstract a lot less data items than a hospital in a SEER region, and a hospital in a SEER region does less than a Commission on Cancer (CoC)-approved hospital, so you’ve got variables.”

But CoC hospitals are required to have tumor boards at certain intervals, in addition to cancer committee meetings, said Johnson, and they usually staff and work those, in addition to the cancer committee meetings, which they also staff and work.

“The NPCR programs receive funding from the Centers for Disease Control and Prevention (CDC),” explained Dryer. “They have certain reporting requirements and their funding (i.e., how much money the state and the CDC gives the registries) will dictate how much [data] they’re able to collect.” Four SEER affiliated programs also received NPCR funding, she specified.

In fact, Dryer added, there are currently 14 SEER-affiliated, population-based registries and three supplemental registries. The SEER registries (since 1973) differ in geographic area based on the population needs represented. The data collected is based on the SEER Program requirements contained in the program manual. With SEER, for example, “The program is set up to represent 26 percent of the population nationally, so a region is included based on socioeconomic [status], race, ethnicity, age and occupation,” Dryer said. The SEER programs is collecting data that provides incidence and survival rates, first course treatment, and survival rates at (a given) stage and end results or mortality data. Ultimately, in the case of SEER, “Researchers can use the data to see what cancer treatment makes a difference at [a given] stage,” she explained.

If that’s not confusing enough, another variable is the type of facility. “If you work in a university hospital, usually you have a greater percentage of complex cases because [the patients are] referred from a local hospital,” Johnson offered. “So the registrar who works in that environment will be coding a more complex case, or a greater percentage of complex cases, than a registrar in a smaller facility.”

What Data Can Do for You

Once a facility determines its needs, the next step involves deciding what the data can tell them.

In Johnson’s previous hospital experience, “We used the statistics from the cancer registry to plan our cancer program,” she explained. “It allowed us to look at how many patients we saw.” Questions such as: “How many breast cancer patients did we send elsewhere to have radiation and would it pay to have a radiation unit in your facility?” are questions you could answer with the data. “These are very important things to know because budgeting is tight,” stressed Johnson. “You can’t think about expanding space, personnel, offering services, etc., unless you know that you have the patient base to support it. The registry is one part of the hospital that can answer all of those questions.”

Ready, Set, Train?

Knowing what your facility needs is half the battle, but the other part is determining who can get it for you. Whatever the decision (in-house vs. outsource), Johnson said that data quality should be the optimal concern. “If you don’t monitor data quality and you are paying someone on a case-by-case basis, you can expect a lot of cases will be done with perhaps a lot of unknowns,” she said.

If the facility bites the in-house bullet, of course, the next step involves finding skilled registrars to do the work.

“It’s a wonderful field, but it’s a hard field in which to find trained individuals,” said Dryer. Not only is the skill set a specialized one, the field has undergone tremendous change, and I don’t see an end to this trend. In 2007, the introduction of the multiple primary and histology coding rules is coming.”

In central Iowa, said Dryer, it’s a no-brainer in terms of how to handle registrar training: in-house. “Most of your training programs are located in Washington, DC, or Denver. We’re located in the middle of the country.” In most cases, training is a costly 2-week stint for the future registrar, and it takes more than 2 weeks for candidates to venture out on their own, she observed.

“We have a training program that introduces candidates to the cancer registry,” Dryer explained. “When we changed over from the Extent of Disease (EOD) [staging system] to Collaborative Staging, of course, we had to train all staff, not only new candidates. Given their location, they opted for in-house training.

As far as who they train, “Most of our people come from registered health information technician or administrator backgrounds, so they do have a basic understanding of anatomy, but what they don’t have is the knowledge of cancer disease process, which depends on the primary site, so there’s a lot more to it than anatomy,” explained Dryer. “Part of the charge in a cancer registry program is to pick up the disease at the time it’s diagnosed, and then knowing at the stage it’s diagnosed what kind of treatment is expected, so you really have to look for everything related to the disease process.”

How Do You Feel About Change?

Nonetheless, there’s still a challenge in luring qualified candidates to the cancer registry. The fact that registrars’ salaries aren’t setting any records doesn’t help matters.

“There was a time when registrars were making more than coders, but that’s no longer the case in Iowa,” said Dryer, who added that coders are at an advantage because they’re responsible for reimbursable dollars. “They have something in which to leverage their profession with for their pay. Unfortunately, cancer registrars don’t have that,” said Dryer.

The latest change that may impact registry staffing is the change over to the Collaborative Staging System. This new system was designed from TNM (Tumor, Node, Metastasis) staging, SEER summary staging and EOD staging so that registrars collect information only once, under one set of rules and the agency under whose jurisdiction the registry falls can pick and choose what they need (see “A Rose By Any Other Name,” March 28, 2005).

As the data quality manager at NCI, Johnson is conducing a reliability study on the Collaborative Staging System, but because of the learning curve involved—it was implemented effective Jan. 1, 2004—it’s still too soon to say how the new system impacts staffing, production, quality, etc.

The final lesson in cancer registry needs assessment seems to be this: Get used to change.

“I’ve been in this field for 15 years,” said Dryer. “Back then, a person was diagnosed with breast cancer and they had a mastectomy, period. Now patients have lumpectomies and radiation, so treatment options have changed. “If medicine didn’t change, then we wouldn’t advance,” she mused. “There will always be changes in this profession.”

Linda Gross is an associate editor at ADVANCE.