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For other articles and previous issues click here. March 28, 2005 Managing
Cancer Registries, Battling Cancer The valuable work performed by certified tumor registrars focuses on maintaining accurate data through precise quality control practices. Most HIM professionals are familiar with and acknowledge the vital role of cancer registries in the research and treatment of cancer. Registries give health officials information that shapes important health decisions. And fundamental research on the study, diagnosis, and treatment of cancer is directly based on registry data. Because cancer registries are constantly maintained with up-to-date information about cancer trends, health officials rely on them to make integral decisions about public health. Advances in research and predicting a patient’s future condition are based on trends and reports extracted from registries. The maintenance of cancer registries is a complex and dynamic landscape that requires registrars to keep abreast of the most recent quality assurance checks. They also must be thoroughly trained and retrained on the latest reporting procedures to ensure that their work is fully compliant with state and national laws. The Four Standards Setters These agencies are the bodies that issue the latest submission guidelines that all registrars must follow. They help ensure that hospitals’ and other healthcare officials’ registries are timely, accurate, complete, and compatible with all state and national registries. While these agencies are responsible for the development of standards, healthcare organizations must seek accreditation directly from the ACoS CoC if they want to be recognized for having established performance measures for high-quality cancer care. A CoC-approved cancer program participates in the National Cancer Data Base—a nationwide oncology outcomes database. Cat Taylor, assistant vice president of oncology services at South Nassau Communities Hospital in Long Island, N.Y., explains: “Registries in hospitals follow the rules, regulations, and specifications that are developed by the American College of Surgeons Commission on Cancer. The commission accredits cancer programs in hospitals, and a key component of that accreditation is a well-functioning cancer registry.” Certification and Training Without a systematic collection and reporting process in place, the reliability and usefulness of registries would diminish. Certification of CTRs ensures that registrars nationwide adhere to uniform state and national reporting standards. One such certified tumor registrar is Toni Allen-Osbourne, supervisor of cancer registry at South Nassau Communities Hospital in New York, which is one state that requires a CTR to submit information from facilities that diagnose more than 100 cancer cases per year. CTR applicants must meet one of several requirements to be eligible to sit for the four-hour national examination. Completing an NCRA-approved college-level curriculum in cancer registry is one way of obtaining eligibility. “Once you’ve passed that exam, you are considered a certified tumor registrar,” explains Allen-Osbourne, adding, “one must receive educational classes to keep up your credentials.” Those continuing education classes must be taken every two years and are mandatory for registrars to retain CTR certification. This ensures that CTRs are aware of new developments in cancer registry data management. Choosing the Right Software “I think it’s really important when you pick software to choose a company that has personnel on board who actually work with the standard setters,” says Phillips. “And those typically are CTRs.” A software vendor whose support staff is comprised of employees who have a hospital- or central-based registry background can be a huge advantage to a client. IMPAC currently has 30 CTRs on staff with extensive experience in hospital and central registries and who are able to communicate efficiently and effectively with client CTRs. Other issues to consider when choosing software is to determine what kind of training, support, and troubleshooting are made available. IMPAC is one of many companies taking advantage of online technology and conferencing as a means to deliver timely client support in addition to personalized on-site education. “One of the things we found most helpful is WebEx to do a lot of not only training but troubleshooting,” says Phillips. “We can set up an instant meeting within a couple of minutes, look at our client’s screen, and we’re doing training like that as well. “Using WebEx and an Internet connection, it is possible to troubleshoot on a moment’s notice,” Phillips adds. “Training, too, can be set up on the spur of the moment or scheduled in advance to take advantage of a planned educational experience and group interaction. Client services staff can even turn over control of the session to the customer for demonstration of user needs. It provides immediate support and can be as effective as going on-site, without the commitment of travel time or expense.” Quality Assurance They perform multiple quality control checks both during and after the initial patient abstract and data collection process. The quality assurance process is ongoing, with an edits system, internal and external audits of data, reabstractions, reporting, and comparison of registry data against state and national databanks. Edits, Reabstractions and Audits,
Reports, and Comparisons While edit checks identify and resolve many problems before registrars submit data to their own and state and national registries, they don’t check for every possible error. That is why registrars employ audits to detect any errors that may not have been flagged during the edits process. Hospitals such as South Nassau Communities Hospital routinely conduct audits of cancer registry data. “One of our audits involves a physician review where 10% of our annual caseload is reviewed by our in-house physician liaison. This is performed to ensure that everything is correct,” says Allen-Osbourne. If healthcare facilities choose to have an audit performed by a third party, administrators are careful to ensure that they are working with a trusted source who can assure confidentiality. Reabstractions are another auditing method used by registrars. An entire reconstruction of the original abstraction, the process involves getting the medical records, pathology report, and original notes and creating a brand new abstract, which is compared with the original for inconsistencies. “It is very time-consuming and very expensive,” says Phillips, “but it’s probably the best way to quality control. It’s a heck of an investment, but if you have the time and money to do it, it’s worth doing.” Another quality assurance method registrars employ is daily reporting. “Every registry should run many reports a day,” says Phillips. “It should be as routine a process as putting data in—getting it back out again and slicing and dicing it different ways.” Inconsistencies, unusual values, and other errors can be detected by analyzing daily reports. These reports can also be compared against state, national, and vendor registries to identify inconsistencies. Lost-to-Follow-Up Cases Patients may become a “lost-to-follow-up” case for any number of reasons. Patients get married, change their last name, and move. And some patients with positive outcomes no longer see their cancer doctor. Registrars rely on old-fashioned detective work to track patients, spending significant time making telephone calls and often writing thousands of letters each year. HIPAA and Confidentiality Issues Technology plays a key role in guaranteeing patient confidentiality of cancer registries. Data that are submitted to state and national registries via the Internet are encrypted, as are certified passwords and software with special lock-out features that prevent unauthorized users from gaining access to data. Additionally, software can provide comprehensive report logs of activities that measure registry activity. Registrars have the ability to track every time private health information is accessed. Report logs also detail any changes made to an abstract and record all imports and exports of data to external sources. Patient Advocacy and Cancer Registry
Reporting Cancer registries also allow patient advocacy groups to guide patients through the labyrinth of cancer care. By studying outcomes of previous cases, health advocates can make specific recommendations based on data extracted from registries. Jack London is a senior consultant at APEX Management Group (a division of Gallagher Benefit Services, Inc.), the organization that runs Patient Pal, a health advocacy group. London says cancer registries play a significant role in recommending a course of treatment for a patient. “We can make a determination as to the effectiveness of the combination of chemotherapy drugs or other services that are provided, whether it’s radiation, tumor removal, and so forth,” explains London. Patient Pal, like many healthcare management groups, has developed its own internal registry, which is the primary tool used in identifying the best care for a positive outcome. “With our database and the type of information we have available, we can say, ‘We’ve seen so many patients with this particular type of malady,’ that we can say to them, ‘Well, we know we’ve got a great outcome at Sloan-Kettering or MD Anderson or Mayo Clinic,’” London says. London also says the knowledge can be used to assure patients that they are receiving the very best advice and treatment. “When cancer becomes one of our most prevalent referrals, simply because not only is it life threatening, but because everyone becomes completely devastated and scared, there are a lot of questions that we are able to answer,” says London about Patient Pal’s clients. “Our goal is to find the very best possible care for them.” The Future of Registries and
Migration to Electronic Medical Records This sentiment is echoed by those in HIM, according to Phillips. “We feel this whole business of electronic medical records is where the future is. It’s time for us to stop typing in data and start managing it full-time. We need to be able to integrate and import and interface everywhere.” As technology improves, cancer registrars will have the ability to maintain registries that meet national standards for accuracy and confidentiality and are more effective in managing cancer data, allowing researchers, health advocates, and agencies to have access to this powerful tool in the battle against cancer. — Dave McGurgan is a Web content editor at phillyBurbs.com and a regular contributor to Delaware Today Health & Fitness guide. |
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