Capturing Cancer Data in Real Time
By Susan Chapman
For The Record
Vol. 25 No. 8 P. 10
A Kentucky project is laying the groundwork for more widespread electronic reporting of cancer cases to state registries.
In October 2012, the University of Kentucky launched the country’s first working model for EHR reporting of cancer cases to a state’s cancer registry. The project marks a milestone in the operation of cancer registries, institutions that have been collecting and analyzing cancer-related data for nearly 100 years.
Cancer registries, which exist in every state, typically fall into three categories: those that function within a health care facility, locale-specific registries that gather information across a specified geographic area, and purpose-specific registries that collect data on particular cancer types. Among the information amassed by cancer registries are patient demographics and medical histories, diagnoses, types and stages of cancer, and treatment. Following treatment, they track patients to gather data on cancer recurrence, survival, and death rates.
Once all this information is gathered, it is analyzed, consolidated, and forwarded to state registries. Then states send the findings to the National Program of Cancer Registries at the Centers for Disease Control and Prevention (CDC). Additionally, state registries sponsored by the National Cancer Institute (NCI) send their data to the Surveillance, Epidemiology, and End Results Program (SEER).
The entire process is invaluable. For example, the wealth of data is critical to determining the location of cancer clusters as well as for the development and tracking of the most effective therapies, treatments, and cancer-control interventions. Public health officials also use the data to make decisions on research funding and educational and screening programs.
The new EHR model at the University of Kentucky offers oncologists and other providers in the state, which has the nation’s highest incidence of cancer, the opportunity to provide clinical data for the Kentucky Cancer Registry in real time, enabling epidemiologists to observe trends in cancer statistics more quickly.
“This is an important step toward making cancer-related comparative effectiveness research studies possible in Kentucky,” says Tom Tucker, MPH, PhD, director of the Kentucky Cancer Registry.
Funded as part of the ARRA’s comparative effectiveness research activities at the CDC, the Kentucky EHR project is an important step toward meeting the needs of cancer-control efforts by ensuring that the most current cancer diagnosis and treatment information is available. The project’s principal investigators, Tucker and Eric Durbin, DrPH, MS, the registry’s director of cancer informatics, were awarded a nearly $1 million subcontract over three years to develop the methods and standards for EHRs to report information directly to Kentucky’s cancer registry.
“The Kentucky Cancer Registry, the Kentucky Regional Extension Center, and the Kentucky Health Information Exchange are currently partnering with 43 additional cancer care providers across the state to establish EHR reporting to the registry,” Durbin says. “This project is laying the groundwork for electronic reporting not only in Kentucky but across the United States.”
In the past, cancer registries collected vast amounts of data from paper. From these documents, staff would follow up to gather missing information and create a consolidated report. Overall, the process could take more than one year to complete.
“With EHRs, rather than doctors’ offices sending paper, we’re now moving toward a paperless system,” says Edmund Lattime, PhD, deputy director of The Cancer Institute of New Jersey, director of the New Jersey State Cancer Registry, and principal investigator for the NCI-SEER Registry. “Even from smaller practices, which relied much more heavily on paper, we’re receiving more up-to-date information faster.”
When a patient has a biopsy, the findings go to the pathology laboratory, the report is read, and a document is created. Now, by using electronic pathology reports, many state cancer registries are bypassing hospitals and receiving preliminary information directly from these reports. “States are going directly to the pathology labs because of time,” says Dianne Cleveland, RHIA, CTR, a Commission on Cancer-trained consultant and a senior national compliance manager at Kforce Healthcare. “Not all hospitals are Commission on Cancer-approved and must be constantly contacted for information. States contact the hospitals and ask, ‘Why haven’t you reported this information yet?’ Sometimes, it’s timing and sometimes it’s just missed. Additionally, not all hospitals have registries.”
Serious ramifications are a possibility for organizations that don’t follow protocol. “There can be penalties for hospitals that don’t report,” Cleveland says. “It can impact Medicare reimbursement or there can be fines. One state told a hospital it couldn’t receive a certificate of need to construct a new building because the facility was behind in its reporting.”
Increasingly, cancer patients are receiving chemotherapy and other treatments in physician offices and similar ambulatory centers, not in hospitals. By inputting cancer information directly into an EHR in these settings, cancer organizations gain greater insight into the current landscape. “It’s important to receive this data from ambulatory settings,” Durbin says. “As we take information from the EHR, we get a more complete picture of actual treatment. It allows us to collect more complete data on therapy in particular and gives us greater accuracy in evaluating cancer treatment and outcomes.”
The timeliness of EHR information gathering also receives high marks. “Having information in real time improves programs and record completeness,” Lattime says. “Real time allows the registry to consolidate a record sooner, and the goal is to have as much of this reporting to come in as complete as possible.”
A common complaint among cancer registry staff revolves around their ability to handle an overwhelming workload with limited manpower. However, when using an EHR to report data, abstraction can be done more quickly, easing some of the burden on registry staff.
“It’s absolutely helping with staffing,” Lattime says. “It’s very challenging to find certified tumor registrars [CTRs]. It’s a specialized position that requires an undergraduate degree along with many hours of training. Candidates must also pass a national examination. The pool is very limited, and we’re currently experiencing a shortage of CTRs. Therefore, the more we can do electronically, the better.”
For real-time data delivery to cancer registries to be successful, organizations must employ a certified EHR that can export the standard electronic message structure, Durbin says. Currently, because of variations in EHR software, not all vendors support the process.
Elizabeth Ward, PhD, an epidemiologist and the national vice president for intramural research for the American Cancer Society who works with cancer registries, says the lack of uniformity among different types of EHR software can cause problems, including having some fields coded systematically while others are just text. This makes it challenging to harvest the pertinent information. “Data are not always recorded in such a way that they are able to be extracted,” she says. “And with less standardization, there is more text mining that needs to be done. This can be time consuming.”
While gathering the necessary information can be challenging, Ward says there is hope that as EHRs become better equipped to exchange information with disparate systems, the process will become more efficient.
Some patient privacy advocates are concerned that using EHRs to report cancer data will raise the prospect of patient information being exposed to unauthorized personnel. However, registry experts believe proper precautions and safeguards have been implemented. Throughout the process, patient information is kept confidential per HIPAA requirements, with no identifiers used in analysis or publication.
“Cancer is a reportable disease,” Durbin says. “We’re required by law to protect patient confidentiality, yet we have to receive the information. Safe transmittal—an encrypted connection from the EHR to the cancer registry database—ensures that information cannot be read by a third party.”
As long as registries are reporting required data elements, there is no HIPAA violation, according to Cleveland, who adds that states receive all data, including patient information, cancer details, extent of the disease, treatments, and outcomes, and consolidate them into a succinct summary.
Lattime says patient confidentiality is a top priority at cancer registries. “Registries don’t provide protected health information [to unauthorized entities],” he says. “Electronics have the potential of making the data more secure in that there is less use of paper documents and thus, in addition to accuracy, the potential of increased confidentiality.”
Ward believes most registries have taken privacy concerns to heart. “The registries are sensitive [to the issue] and there are safeguards built in,” she says. “Registries have specific authorization to collect and use data. Of course, there’s always a risk of breaching confidentiality. However, we will become more sophisticated as more and more physicians use an EHR.”
The Road Ahead
Lattime hails the University of Kentucky team as a national leader in electronic cancer reporting, while Ward believes its work is an important step forward that needs to be built on. “It’s really important that we continue to fund and support this methodology for cancer registries for two reasons,” she says. “We want to continue to accurately capture data from physicians’ offices, and we also want to gather information on all treatment. The latter is especially important to obtain because it will increase the value of the information. Right now, treatment data are especially hard to capture. However, as this changes, everyone benefits.”
Other states have noticed the Kentucky program’s success and followed in its steps. For example, Missouri has undertaken an expansive project to identify nonhospital sources, such as physician offices, which can use EHRs to report cancer data. The idea is that cancer cases diagnosed and treated in ambulatory settings are underreported and require greater cooperation from smaller facilities to gather data effectively.
It’s also important to note that stage 2 of meaningful use calls for physician EHR reporting to cancer registries for comparative effectiveness research. In that regard, much work still needs to be done, Durbin says. “We’re working to overcome all the challenges we’ve identified and while we’re still not yet at the point of receiving all information in real time, we’re working closely with providers and EHR vendors to improve the process,” he notes.
— Susan Chapman is a Los Angeles-based writer and author.
New Project to Develop Big Data Cancer Database
The American Society of Clinical Oncology (ASCO) has announced that it has completed a prototype of CancerLinQ, an HIT initiative to achieve higher-quality, higher-value cancer care with better outcomes for patients. The prototype demonstrates the feasibility of an HIT-based learning health system, which the Institute of Medicine (IOM) has defined as critical to the future of the nation’s health care system.
The ASCO is developing a knowledge-generating computer network that will collect and analyze cancer care data from millions of patient visits with expert guidelines and other evidence to generate real-time, personalized guidance and quality feedback for physicians.
“Today we know very little about the experiences of most people with cancer because their information is locked away in unconnected servers and paper files,” says ASCO President Sandra M. Swain, MD. “Only the 3% of patients who participate in clinical trials are able to contribute to advances in treatment. CancerLinQ will transform cancer care by unlocking that wealth of information and enabling every patient to be a cancer knowledge donor.”
CancerLinQ realizes the vision of a learning health system as described in a landmark 2012 IOM series of reports. In the IOM’s vision, “Science, informatics, incentives, and culture are aligned for continuous improvement and innovation—with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral by-product of the delivery experience.”
The ASCO built the CancerLinQ prototype to demonstrate the feasibility of such a system and provide lessons about the technological and logistical challenges involved in full-scale implementation. The prototype includes deidentified data from 100,000 patients with breast cancer who were treated at leading cancer care institutions in the United States. It reflects more than one year of formative work, including consultation with the oncology and IT communities; efforts to improve oncology data standards; and extensive technology and legal analysis.
To build the prototype quickly, the ASCO linked together several open-source IT applications, encompassing CancerLinQ’s planned core functions, including the following:
• Real-time data collection: The prototype can successfully accept any cancer care data in any standard directly from EHRs and other sources, overcoming the longstanding hurdle posed by inconsistent health data standards. Data can range from genomic profiles to lab tests and even physicians’ notes.
• Clinical decision support: The prototype can generate individualized guidance on the care of any given patient with breast cancer based on automated, machine-readable versions of the ASCO’s expert breast cancer guidelines. The full CancerLinQ system, when implemented, also will provide guidance based on the collective experiences of other similar patients.
• Data mining and visualization: The prototype allows exploration of an extensive database of information on the care of patients with breast cancer, including patient characteristics, treatments, and outcomes, to identify real-world trends and associations and new research hypotheses.
• Quality feedback: The prototype can provide immediate feedback on physicians’ performance against 10 quality measures from the ASCO’s Quality Oncology Practice Initiative.
The prototype ultimately will include data on more than 133,000 cases from oncology practices across the country, far exceeding initial expectations and lending further strength to the lessons that can be drawn from the prototype.
— Source: American Society of Clinical Oncology