April 14, 2008

Reshaping Cancer Registry — Connecting Data, Improving Care
By Laura Gater
For The Record
Vol. 20 No.8 P. 16

By providing easily accessible and more accurate data, electronic medical records are helping to transform how registrars track patients.

In the United States, cancer registration is the essential way of collecting information about the types and incidence of cancer, anatomic location, extent of the disease at the time of diagnosis, treatment received, and outcomes.

The Centers for Disease Control and Prevention (CDC) funds state health agencies to collect this type of data. Many different national and regional programs actively collect and report data for cancer incidence, mortality, morbidity, and survival. State-specific cancer registry data are also reported and published; however, they are not currently reported to the CDC. Information from national and regional cancer registries provide greater and easier access to data for scientists and physicians who may be researching such things as geographic areas with higher proportions of certain cancers or the costs of treating various cancers.

EMRs and Cancer Registry
“EMRs [electronic medical records] are helpful in relation to cancer registries, but, in my opinion, it depends on the setup of the EMR and the varying degrees of organization that are available within an EMR,” says Laurie Hebert, RHIA, CSS, CCS-P, CTR, the director of cancer registry services at Care Communications. “If the information in an EMR is well organized, the compilation of information can enhance the capture of data that is housed within the cancer registry.”

Susan Koering, MEd, RHIA, CTR, who performs oncology registry at Minneapolis’ Park Nicollet Methodist Hospital, says the facility’s cancer registry has been integrated into its EMR and is now available online.

Park Nicollet’s accessions (new cases added to the database) number more than 1,800 annually, and the system tracks about 900 patients per month with a registry staff of 4.5 full-time employees. The cancer registry dates back to 1974, with computerization following soon thereafter. Park Nicollet and its clinics integrated in 1993, which made data available systemwide.

The registry is used to help fulfill Commission on Cancer requirements that are necessary to maintain the status of a teaching hospital, according to Koering. This includes abstracting the potential 1,800 new cases within six months of the first date of contact, chronicling cancer staging, monitoring follow-up rates, and tracking unique data items for ongoing or future study. When Koering and her colleagues tackle huge projects—such as the current one involving five-year projections for their patient population—the EMR becomes an even more valuable resource.

“We have a contract with a cancer registry software company and have access to our systemwide EMR, which includes data from the hospital and all of our 25 clinics. Patient records from outside sources are scanned into the integrated medical record. Information for case abstraction is at our immediate access. We have a process whereby cases needing annual follow-up are matched monthly to the systemwide database for current follow-up dates. New dates update the registry database,” explains Koering.

Technology is also a factor at Wisconsin’s Aurora Health Care, which consists of 12 acute care hospitals with a formal cancer registry. In 2002, it implemented a multihospital, Web-based registry software system at a lower total cost than if purchased and implemented individually.

“This software allows us to run facility data individually or combined from any location,” says Lisa Robinson, RHIA, CTR, Aurora’s regional manager of clinical data registries. “This, in addition to being a ‘hub-and-spoke’ management model, has allowed for uninterrupted coverage between sites by utilizing our combined workforce of experienced certified tumor registrars to abstract and report data into and out of the registry from any location.”

Robinson and her colleagues have found that their multihospital, longitudinal database has improved patient care within Aurora by providing systematically abstracted data that can be analyzed and compared with other providers to determine best practices and patient outcomes.

“Cancer registry data is required by law to be sent to the Wisconsin Cancer Reporting system within Vital Records, and because most of our registries are Commission on Cancer accredited, information is also sent in response to the yearly call for data from the National Cancer Data Base [NCDB]. Aggregate and comparison reports given back to us by the NCDB are very useful and gauge how we are doing in relation to the rest of the cancer programs in the country,” Robinson explains. “Internal requests for information come from many providers and departments on a routine basis. Reports of cancer data are needed for administrative planning, business marketing, research, grant applications, scientific papers, end results reporting, and, most importantly, to track how specialties are meeting national guidelines and quality measures.”

According to Deborah Perriello, BA, CTR, the northeast registry services supervisor at IMPAC, one of the most important functions in a cancer registry is to obtain outcome data, which provide valuable information on treatment and survival. “We are required by the Commission on Cancer to obtain annual follow-up on cases in the registry,” she says.

The task of compiling and maintaining these huge amounts of information has been made easier through the use of EMRs, according to Robinson.

“In the past, everything was paper driven: the documentation within the medical record, the abstracts, the logs, the reports, etc. For those lucky registrars who did have computers (usually stand-alones), much time was spent manually backing up information onto multiple floppy disks and printing out paper abstracts for fear of a computer meltdown,” she says. “Recently, cancer registries have learned to take advantage of the EMR, networks, and other electronic processes to help automate registry functions that in the past were manual and required a large amount of time. The evolution of medical informatics has reshaped the way we do business and where we do business. Many registrars now are able to work directly out of their homes and electronically send information to those who can benefit from it.”

Connie R. Grace, LPN, CTR, the owner of Grace Registry Services in Renton, Wash., appreciates the changes that have occurred over the years, from when she had to use index cards to track follow-up cases to the progression to computerized databases and nationwide electronic cancer registries.

The cancer registry community has widely adopted the use of software to fulfill its work and mission, notes Marjorie van der Pas, MS, CCRP, an EMR and data product manager at IMPAC, adding that the interest in EMRs is growing but not yet completely adopted nationwide. Cancer registrars have improved their computer skills, while physicians and administrators are using registry data to further research treatments, prognoses, and costs of care.

“Cancer registry will challenge EMR users to be more accurate and complete in data entry,” says Donna Getreuer, RN, MSN, CTR, the director of decision support at IMPAC.

Working solely with an EMR within a registry has many advantages, according to Robinson, but there are a few drawbacks, one in particular being downtime. Another is the mistaken impression that EMRs’ ability to download data directly into the registrar is a threat to the job security of cancer registrars.

“Registrars are in demand more so than ever before,” Robinson says. “Ultimately, the certified tumor registrar [CTR] who has in-depth knowledge of the oncology arena needs to verify and reconcile the information obtained from the disparate documentation systems and code it according to a defined data set such as FORDS [Facility Oncology Registry Data Standards] so it can be compared, benchmarked, and trended against national quality measures and guidelines. In addition, the CTR is required to track any treatments the patient may have received outside of the organization to provide an entire picture of what transpired in terms of therapy for that person. Furthermore, they have in-depth processes to follow the cancer patients annually for their entire lifetime. No one else really can do that.”

The enterprise application integration of an EMR is just that—an integration of many applications into a patient-centric repository. It would be impossible to have interfaces built for all the applications that produce various documents; however, Robinson says Aurora is getting closer to having one source to access them all rather than having to access them individually for abstracting purposes (eg, pathology system, radiation oncology system, pharmacy system).

“Other advantages [of having an EMR integrated with the registry] include having freed-up desk space and the ability to work remotely,” she adds. “Most registrars have dual monitors so they can view the EMR on the one screen and, at the same time, enter information into the cancer registry software on the other. On the flip side, registrars say it seems to take longer to click on documents rather than quickly flipping through the paper medical record; however, information is clearer and able to be cut and pasted in the registry text fields for verification of the coded fields.”

The links that connect the EMR to the registry are evolving, notes Koering, adding that the transformation will readjust the registrars’ focus to data editing and more quality-of-care issues. “We need trained registrars who can see potential adaptations of the EMR to meet the needs of the cancer care team. We have a need for more trained registrars [because] our current workforce is aging and there will need to be registrars to replace them,” she says. “The EMR will continue to impact cancer and other disease registries in the future through ongoing upgrades and the creation of new linkages to get the exact information we want from the database and adding new disease diagnostics tests as they evolve.”

Koering points out that the EMR allows registrars to be just a few keystrokes away from invaluable information. “With one’s confidential log-in, we can access data, create query checks, and supply data for ongoing quality care. We can request a work order for data from information technology sources in our health system. We have cancer registry software that allows us to add names and disease site only so we know at all times how many cases need to be abstracted,” she says. “In the past, we would need to request a paper medical record or records from other sources, such as radiation therapy, wait for their arrival, look for the information we need, and return the records. We would have a paper tickler file on those cases needing to be abstracted or entered. Being a registrar for about 24 years, I have seen a lot of change. I have had to be willing to address change even though I think our processes are working fine. The EMR has made the job more timely, accurate, and complete.”

A Look Ahead
“I personally see the future of the cancer registry expanding, especially with providers keying in on quality measures and pay for performance,” Robinson says. “Even if electronic notes are developed in a synoptic format, the information will be no good alone unless it is combined with the rest of the verified data from other sources. The only logical place to combine demographics, work-up, diagnosis, stage, treatment, and outcome is within the tried and true longitudinal platform called the cancer registry.”

The American College of Surgeons, along with the National Cancer Registrars Association and other cohorts such as vendors, have worked tirelessly for years to define and tweak the data elements contained within the registry. Constant upgrades to data edits and cross-checks ensure that cancer data is getting better each year, according to Robinson.

“Electronic quality improvement packets sent to us through a secure Web server from the NCDB enable us to reconcile cases that appear to have fallen out of concordance with quality measures and give us the ability to instantly update the data upon investigation. Colored reports and comparison graphs are available to be printed instantaneously so updates can be given routinely to cancer committee members and staff,” she explains.

Hebert doesn’t see the feasibility of ever integrating cancer registry information with EMRs because the data contained in a cancer registry is very specific, such as that found in a trauma registry. “The reason for having a separate data repository is because it has a separate function,” she explains. “A lot of data captured in a cancer registry is very detailed, and you don’t want or need all that information in an EMR.”

Grace agrees, noting, “We’ve gleaned out what we need to analyze cancer cases; we look at everything that led up to diagnosis, treatment, and follow-up for life. We screen pathology reports to find cases, and we screen codes entered by the medical records department.” Integrating the two means that there would be a lot more material for her to review, though it most likely wouldn’t help her.

Likewise, the cancer registry wouldn’t be as effective as it is today without EMRs. “I can be more current with my cases. I can report them day by day because I can screen them daily with the use of EMRs,” says Grace. “We could be effective without an EMR, and we have been effective without it in the past, but I wouldn’t want to go back to that. Now I can find data easier, and it’s more accurate. Cancer registrars can work from home in a virtual private network, and we can track patients anywhere. Cancer registry is just way more effective with the aid of EMR. It’s very exciting.”

The EMR was built and designed to save lives and improve care for patients, while also saving on duplicate effort and cost. One example cited by Robinson, while unrelated to oncology, has to do with her teenage son who saw an array of different providers over the years as an adolescent. Then one day during a routine visit, his primary care physician pulled up the EMR and after comparing visit notes within an electronic flow sheet, noticed an abnormal trend and fortunately diagnosed a rare condition that otherwise probably would not have been caught until it was too late.

“I, along with our CTRs, believe that our fully integrated EMR has helped to improve the completeness, accuracy, and timeliness of the registry data over the last few years. It also saves us valuable time, as we no longer have to request and pull paper medical records for review,” she says. “Instead, all case finding and coding lists now come to us electronically. The EMR has helped us track patients better for follow-up because no matter where they are seen within our system, we can review a patient’s status from afar. Lastly, computerization has enabled physicians to electronically fill in the TNM [tumor, node, metastases] staging forms from their office, home, or hospital computer. Once signed off on, the form automatically gets uploaded to the EMR, which we as an organization still feel is a necessary and useful tool for both provider and patient, in the fact that it helps to guide appropriate treatment and help estimate prognosis.”

— Laura Gater’s medical and business trade articles have been published in Healthcare Traveler, Radiology Today, Corrections Forum, Credit Union BUSINESS, and other national and online publications.