The Cyber Cancer Registry


Vol. 18 •Issue 21 • Page 12
Registry Perspectives

The Cyber Cancer Registry

Bringing together areas of expertise for a new approach in cancer registry education.

What do you get when you combine experts in information technology with experts in cancer registration? Information technology has changed the dynamics of cancer registry work, and registrars are increasingly utilizing electronic health information to build the cancer registry abstract. No longer are the days when staff can spend months on end in one-on-one training; instead registries seek those who already possess a certain skill level. Training can then focus on honing the additional skills needed for cancer registration. Providing resources to access training in any area can be challenging in today’s work environment, driving the need to explore new ways to deliver various components of the necessary training.

Even in the most comprehensive cancer registry educational programs, there is little that can compare to the hands-on experience gained by working in the actual cancer registry. With the increasing complexity of data collection, implementation of changing rules, and time constraints, training a new cancer registrar can be a very time consuming and labor-intensive process. Education and training are essential elements in data quality, completeness and timeliness and must be offered in diverse formats and methods of access. Traditional educational formats such as in-person and Web-based workshops are excellent resources for gaining the fundamental level of knowledge needed for cancer registration. However, it is more difficult to replicate the actual hands-on experience.

Web-based Learning Tool

Recognizing these challenges, the need to develop an interactive, Web-based practice environment was realized. Having a learning environment that requires electronic information to be manipulated adds to the skill level necessary in today’s cancer registry. The Centers for Disease Control/National Program of Cancer Registries (CDC/NPCR) and the National Cancer Registrars Association (NCRA) embarked on a joint effort to design and develop a Web-based learning tool. The application, appropriately named the Cyber Cancer Registry, will allow potential benefactors and stakeholders to gain hands-on practice in many areas of cancer registry operations. Through a contract with CDC/NPCR, Northrop Grumman Information Technology (NGIT) is developing the Cyber Cancer Registry system following the full software development lifecycle. Through the same contract, NCRA is providing subject matter expertise in formal education, hospital and central cancer registry operations and management through the creation and maintenance of detailed module content, exercises, assessments and feedback responses.

The Cyber Cancer Registry will be completed in phases and will consist of modules pertaining to the core functions of cancer registration in the hospital and central cancer registry settings. The initial phase in the development will focus on casefinding of hematopoietic diseases, cancers of the most common sites (lung, colon, breast and prostate), and site and case types with high error rates. The first phase will be available in early 2009. The framework for the system will allow for the ability to add other functions (i.e., abstracting), cancer diseases and levels of detail in future releases.

The Cyber Cancer Registry mimics the medical database structure and recreates database activities. Actual de-identified medical record source documents submitted by cancer registrars working in the field provide users a simulated registry experience. The medical record documents present varying degrees of casefinding difficulty and challenging situations in which coding rules and instructions must be applied. Users can obtain valuable experience by following a road map that sequentially takes them through each step of the casefinding functions. Each module gives immediate feedback to the user through practical exercises and assessments to evaluate the level of competency, track training scores and provide a certificate of completion for each assessment.

Enhancing Education

In practice, these modules can be used to enhance the education of cancer registrars and can potentially serve to satisfy part of the clinical practicum for NCRA-approved formal education programs. While there is more access to these programs, the opportunity for students, especially in remote places, to perform the clinical practicum can be limited. Even when there is an opportunity to participate in a physical registry, the staff may have limited time to dedicate to one-on-one training and students may fall short of meeting learning objectives. In addition, some may be reluctant to allow students to work in their databases for fear of data corruption. These databases are irreplaceable and contain real and sensitive patient information. The Cyber Cancer Registry allows users to work with realistic data without affecting a facility database or risk potentially sending erroneous data to regional and national surveillance programs. Users will be able to perform these functions in an environment that will allow them to make, see and correct mistakes.

While training of new cancer registrars is an important use of the Cyber Cancer Registry, it is not intended solely for that purpose. A system such as this can have many uses in improving the knowledge and skills of cancer registrars who possess varying areas of expertise. Cancer registry staff may not have access to complete medical records to practice and learn the casefinding process. Some hospitals may see more of one type of disease and very few of others. The skills for casefinding of that particular disease process may need a little polishing or they may need to develop skills in new concepts or rules. The system allows those needing experience in a particular area the opportunity to complete those activities at their own pace and without relying on the availability of a supervisor or co-worker.

So, what do you get when you combine experts in information technology with experts in cancer registration? The result is a “virtual reality” in which users gain experience and improvement in cancer data management activities that otherwise would be difficult to obtain.

Melissa Pearson is the education content coordinator for NCRA and serves as the project leader for NCRA on the Cyber Cancer Registry content development. Contributors to this article include Lynda Douglas and Karen Ledford from CDC/NPCR and Shannon Orr from NGIT.

Your Help Is Needed

The Cyber Cancer Registry will be built using actual source documents. Your assistance is being requested by providing copies of pathology, autopsy and cytology reports from the medical record that will be used to simulate casefinding activities.

This call is open for all sites (ICD-O-3 codes C00.0-C80.9) and histologies (ICD-O-3 codes 8000/0-9989/3). A description of the source documents being requested is provided below. Reports should include reportable and non-reportable conditions that provide straightforward and complex cases for determining eligibility. Interesting or challenging cases are encouraged.

I. Description of Reports Requested

1. Pathology

  • Core needle biopsies, incisional biopsies
  • Excisional biopsies, resections

2. Bone marrow biopsies

3. Autopsy (no known disease prior to death)

4. Cytology

  • Fine needle aspirations, brushings (excluding PAP smears), washings
  • Urine, sputum
  • Spinal fluid, pleural fluid, pericardial fluid, peritoneal fluid

II. Confidentiality and Case Preparation

1. Photocopy the complete report for the types specified above (PDF and electronic formats also accepted). Other reports from the medical record are not needed.

2. Remove or black out all facility, physician and personal identifiers. Personal identifiers include: patient name, physician name, health care facility name, logos, addresses (street, city, state, zip code), telephone numbers, date of birth, Social Security Number, medical record number or any other identifying information.

3. Number each case (case 1, case 2, etc.)

4. Write the case and page number on each page (Case 1 pg.1, Case 1 pg.2, etc.)

III. Report Submission

Please send reports as they are collected and copied. Multiple submissions are preferred rather than waiting to send all reports right before the deadline. Cases may be sent by fax, FedEx, e-mail or regular mail.

Deadline for Submission: Nov. 15, 2008

Send report to: Lilly Grossman, Education Manager, NCRA, 1340 Braddock Place Suite 203, Alexandria, VA 22314, fax: 703-299-6620, e-mail: lgrossman@ncra-usa.org.

For more information, contact Lilly Grossman.

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