The Best of Both Brains
By Alice Shepherd
For The Record
Vol. 20 No. 26 P. 10
Cancer registries combine technology and human know-how to present cancer data in a whole new light.
As medical records continue to evolve into electronic health information, the processes of cancer registries are changing in parallel. Although much paper remains, registries have made progress in driving toward automation and electronic communication. The cancer registrars who capture summaries of the history, diagnosis, treatment, and disease status of patients in their databases rely, in varying degrees, on both paper and electronic records. They also receive and send data both electronically and by “old-fashioned” means of mail, phone, and fax depending on the status of their hospitals’ electronic environment, organizational structure, and patient population size.
Small or medium-size hospitals often have just one cancer registrar who works on a nonnetworked PC, abstracting from patient charts or the electronic medical record (EMR), if available. At Antelope Valley Hospital in Lancaster, Calif., Maria Caro, RHIT, CTR, president of the Southern California Cancer Registrars Association, records and communicates data on approximately 600 cancer patients per year on a PC with CNEXT software, a cancer data management system provided by the state. The hospital’s medical record has been electronic since 2006, with nurses’ notes and a few other remaining paper records being scanned in. “Being able to access records on the computer has made my job much more efficient,” says Caro. “I use the dual-screen system [two monitors linked to the same computer] to access the EMR and registry software simultaneously.”
The registry database also tracks treatment and follow-up information from outside providers, but this information is not obtained electronically. Caro sends a form letter provided by the CNEXT software and receives paper records in return.
On a regular basis, she uses CNEXT to secure data in a zip file and transmits it via e-mail to the Los Angeles County Cancer Surveillance Program, one of the state’s 11 regional registries. Each year, she receives a disk with comparative demographic, site, and staging data from the regional registry, which can be used to benchmark the hospital against other Los Angeles County facilities.
“There are about 3,000 hospital cancer registries in the United States whose work revolves around diagnosis and treatment,” says Herman Menck, MBA, FACE, project manager with the Los Angeles Cancer Surveillance Program. “In addition, there are regional and state registries and a national registry which capture statistics on cancer incidence, both for medical care and public health measurements. They all derive most of their data from hospital registries.”
The Los Angeles Cancer Surveillance Program collects data from the county’s approximately 150 hospitals and freestanding labs. Most data are submitted electronically. For smaller hospitals without a registry, the regional program sends a staff member to abstract data from the medical records. “The regional registry was originally created not just for data collection but also to provide outreach to the community, handle cancer cluster reports, and analyze the burden of care in the community,” Menck explains. “To some extent, that is still true. The registry is located at the University of Southern California, within easy reach of researchers.”
Regional registries such as the Los Angeles County Cancer Surveillance Program perform quality control checks on data submitted by hospital registries before submitting them to the state registry. In turn, the state registry performs its quality control checks before submitting the data to the national registry. “Each registry does its own quality review and gives feedback to the reporting entity,” says Caro. “That way, the data is triply quality controlled.” Submissions from registry to registry are electronic.
Certified tumor registrars (CTRs) and others involved in cancer research also benefit from the data that are now available to the general public on the Internet. “When we need state or national statistics, we simply access publicly available and searchable data through the Internet,” says Caro. “Some examples of Web sites are the American Cancer Society [www.cancer.org], the National Cancer Institute’s Surveillance Epidemiology and End Results [www.seer.cancer.gov], and the California Cancer Registry [www.ccrcal.org].”
Large Cancer Center
Larger hospitals usually have several CTRs who are networked within the department. That is the case at City of Hope, a comprehensive cancer center in Duarte, Calif., where cancer registry administrator Ina Ervin, CTR, manages six CTRs and one assistant who are networked within the registry. Because the hospital’s EMR is only 75% complete, registrars rely largely on patient charts. Patient follow-up data are requested from outside providers using the form letter produced by the state-provided CNEXT software.
An exception to the paper records used by City of Hope’s registry is the Case Ascertainment System (CAS) within CNEXT. “The pathology report arrives electronically through CAS every night,” says Ervin. “That’s how we derive 95% of our case findings. We review the pathology report and identify reportable cases, which are then automatically accessioned into CNEXT.”
Ervin transmits data to the Los Angeles County Cancer Surveillance Program electronically via CNEXT twice per month, including follow-up on previously submitted information. In turn, the regional registry provides follow-up information on disk twice per year on City of Hope patients who have seen other providers. The disk automatically updates the CNEXT record.
Multihospital Healthcare Organization
Aurora Health Care, a system of 13 acute care hospitals and 12 Vince Lombardi Cancer Clinics in Wisconsin, works with Electronic Registry Systems, the provider of a multihospital, Web-based cancer registry system on the application service provider (ASP) model. “Ten years ago, I had to physically go to each hospital and query information from its own registry database,” says Lisa Robinson, RHIA, CTR, regional manager of clinical data registries. “Now, each hospital’s information can be collected and reported on separately or can be pooled to examine across Aurora from one location. We own the database, but the ASP provides the software and servers. Using outside servers means strong confidentiality measures must be in place. Only we can see patient-identifying information. For reporting purposes that are not IRB [institutional review board] approved, we submit aggregate data or blind the information using anonymous accession numbers.”
To submit information to the National Cancer Data Base, Aurora sends an error-free electronic file directly from its registry via the organization’s Web site. “Our Web-based system allows us to upload each hospital’s file from a single location if we wish,” says Robinson. The national statistics obtained in return are used for benchmarking to other Commission on Cancer-approved programs in the United States and for internal quality improvement studies. Survival statistics are obtained from tracking patients for their lifetimes as they receive treatment within and beyond Aurora.
Having Web-based, aggregate data from all locations facilitates planning and thus improves care. “For example, we brought in two GYN [gynecological] oncologists based on the number of GYN cancers we were seeing,” says Robinson. “We see over 1,000 new breast cancer cases a year and, based on that data, we have implemented dedicated breast oncology surgeons at each site. Some years ago, based on registry data, we were able to justify the purchase of a PET scanner, and now we are considering adding neural oncologists to our staff. Using the data to check treatment by stage of disease against NCCN [National Comprehensive Cancer Network] guidelines and quality indicators is another very important use for the data to ensure and confirm quality care by our providers.”
Prior to deploying its multisite, Web-based registry system, Aurora had disparate software systems in each hospital until they were combined and converted in 2001. For organizations contemplating such a conversion, Robinson recommends: “Ensure that all of your data is clean and run through the NAACCR [North American Association of Central Cancer Registries] quality checks. Never try to convert data unless those checks come back 100% error free.”
Aurora’s EMR is a Web-based, Citrix application that can be accessed from any location within the organization. Data can be transferred and merged between the EMR and the cancer registry via comma-delimited files or Health Level Seven transfers. “We will be implementing an electronic merge for case finding from our pathology system,” says Robinson. “It identifies all the patients who have a malignancy and sends the data to the registry system. Once a registrar determines that information on a certain patient should go into the registry, all demographic, topography, and pathology information is automatically uploaded to the abstract within the suspense file.”
Aurora has a better than 95% follow-up rate for all patients within the database. For those patients still being seen within the system, electronic merges from the data warehouse help eliminate the manual search process for recent dates of contact. For those patients who are being seen outside of the system, Aurora does not yet have electronic systems in place to collect the information. “Registries reciprocate information on shared patients on a regular basis, either by phone inquiry or letter,” says Robinson. “Although this sharing of information is very important for accurate recording of all treatment, some registrars fail to recognize that it is permitted under several HIPAA exemptions.” Because Aurora’s registry collects information from outside the organization, its registry database is maintained separately from the EMR.
Aurora employs 12 CTRs and has a low turnover rate. “We train from within. We hire RHITs or RHIAs and have them in the same professional category as the billing coders, so we don’t lose a registrar to being a coder and we don’t lose a coder to being a registrar,” Robinson explains. “Having a large team of CTRs is also helpful when one goes on a leave of absence. We’re able to compensate via a hub-and-spoke model.”
Once Aurora’s EMR is complete, Robinson plans to investigate artificial intelligence software to perform some registry functions in hopes that it will free up registrars to work on analyzing data and producing more outcome studies.
Solutions to the CTR Shortage
Although Aurora has plenty of CTRs, the industry in general is experiencing a shortage. “Demand for CTRs greatly outweighs supply,” says Shelly Paterson, CTR, clinical data services consultant with HealthPort, which, among other things, outsources HIM professionals. “The cancer patient population is growing, and not enough CTRs are entering the profession. One reason for the shortage is a lack of knowledge. The title ‘certified tumor registrar’ does not describe well all that CTRs actually do. They don’t just register tumors; rather, they are the first line of research. CTRs have transitioned from simple data collectors to data managers and viable members of the cancer program team.”
“The advent of the electronic health record and electronic communication provides an opportunity for CTRs to do abstracting from home, a significant benefit which may help attract more people to the profession and help alleviate shortages,” says Joyce Jones, CTR, chief operations officer for MLT Medical Coding, which provides CTRs and other medical professionals on an outsource basis to work on site or remotely. “Of course, they still have to be at the hospital for meetings and management tasks unless they job share with another on-site CTR.” Jones notes that working from home gives CTRs quiet time, so they can focus on abstracting without interruption, provided the home is distraction free.
The logistics of connecting from home depend on the hospital’s registry software and EMR setup, explains Jones. For example, in a Web-based system, remote workers can connect from anywhere via the Internet. Other options are logging in through a virtual private network (VPN) or secure site, either directly to registry computers or to the network where the registry database is stored. Utilities such as Webex or GoToMyPC may also work to connect a remote registrar to a computer; however, anyone on site could not be logged into that computer at the same time. IT department coordination is essential in planning and establishing remote connections. Because confidential patient information will be utilized, compliance officers and HIM managers should also be consulted during the planning stages.
Increased automation will probably not decrease the demand for CTRs in the foreseeable future. “Some vendors offer the capability to transfer data from the hospital registration system to the cancer registry database,” says Jones. “However, it pays to carefully scrutinize that capability because when too much information is transferred, registrars could find themselves wasting time reviewing and deleting unnecessary data. Automatic transfers should be a time saver.”
For hospitals experiencing a shortage of CTRs, outsourcing and remote registry services may be cost-effective alternatives. Through a remote cancer registry service such as HealthPort’s, organizations can access CTRs nationwide. “Abstracting is easy to do from remote locations as long as CTRs have access to the registry’s software system, the medical record, and any other hospital software used in the diagnosis and treatment of cancer,” says Paterson. “It is cost-effective because abstracters or CTRs can work from home. Patient data is exchanged through secure VPN connections, and PCs are password protected and locked in secure locations. Special studies and reports often can also be done remotely, and while cancer program management requires some on-site presence at times, it can be done remotely as well.”
As electronic communication is increasing the efficiency and effectiveness of cancer registries, their value to organizations is growing as well, notes Paterson. “Cancer registries have benefits beyond being a research tool,” she says. “The data they collect can be used when looking at market status such as referral patterns. [They] can also be useful for reviewing equipment needs and cost projection studies. Data analysis can help provide the administrative team with information for decision-making dashboards. It can show which cases are being referred out and which tests are being outsourced. Bringing the tests in house with the addition of equipment and hiring specialists to keep patients in house could save money or even increase market share.”
The Future of Cancer Registrars
Cancer registrars sometimes fear that the increased use of computing will ultimately lead to a registry in which all work is performed by machines. “That’s a short-sighted view,” says Menck. “Much of the work in a cancer registry will continue to require analytical skills. However, increased automation is always a good thing. It frees up human brain power to concentrate on the more interesting tasks machines can’t perform.”
The work of registrars produces high-quality information that is used in cancer management, while electronic databases and communication channels have brought new efficiencies. The information in cancer registries provides a total picture of the cancer patient population that is not available from any EMR. “The cancer registry is a function every hospital should have,” says Robinson. “It’s a hidden jewel that reveals information in a whole new light.”
— Alice Shepherd is a southern California-based business-to-business journalist specializing in healthcare topics.