Let’s follow Cheryl, a 55-year-old woman.
Cheryl goes in for her regular mammogram, a screening test that helps detect if a woman has breast cancer or not. Cheryl started getting regular mammograms when she was 50 years old, which is when most women start going if they have no family history of the disease or any other risk factors. The test had always been clear before, but this time, Cheryl’s mammogram shows a new pea-sized lump in her left breast, and the radiologist thinks it might be cancerous. When Cheryl arrives for her appointment, she fills out papers related to her “Personally Identifiable Information” (PII). PII includes facts like:
- Date of birth
- Social Security number
- Health insurance
- Medical history
The radiologist contacts Cheryl’s doctor, who then schedules a test called a biopsy, where a little bit of the lump tissue is removed and studied to see if it is cancerous or not. In this case, the lump, which is also known as a mass, tumor or a lesion, turns out to be cancerous (pre-cancerous ones also need to be treated).
The doctor then sits down to talk to Cheryl about the different ways her cancer can be treated. Treatments can range from one type of treatment, such as chemotherapy, to a combination of treatments like chemotherapy and surgery. (Patients always need to be sure they understand all their options before making a decision about treatment.)
In Cheryl’s case, she has an invasive ductal carcinoma, which is the most common form of breast cancer. After talking to her doctor, she decides, in her case, that she will start treatment with surgery.
Cheryl meets with her surgeon, and goes over all her surgical options, including the pros and cons of different procedures. Cheryl chooses to have a lumpectomy, where the lump or tumor is removed from the breast (unlike a mastectomy, where the whole breast is removed.) And when Cheryl goes to the hospital for her surgery, she again provides her PII. After her surgery, the lump tissue is sent to a pathology lab to be analyzed.
A pathology report notes:
- Stage. (Stage 1 in Cheryl’s case, which means it’s in an early, more treatable stage)
- (0.7 cm or about a ¼ of an inch in Cheryl’s case)
- Type of cancer. (In Cheryl’s case, infiltrating ductal adenocarcinoma)
- “Margin” status. (“Clear,” which in Cheryl’s case, means no cancer cells are seen on the outer edge of the tissue; a “positive” result would mean more surgery might be needed.)
- Hormone receptor status. In Cheryl’s case, her tumor was hormone-receptor-positive.
Based on the pathology report and other tests and exams, Cheryl and her doctor decide on the best course of treatment, which may include chemotherapy, radiation, and hormone therapy.
Once Cheryl is diagnosed with cancer, by law, the information is reported to the Louisiana Cancer Registry (LTR). The LTR is a population-based registry that collects cancer information to understand the extent of the disease in Louisiana. This information is used to support research and implement programs and solutions to reduce cancer rates, as well as improve care and quality of life for survivors.
Cancer data is gathered by certified tumor registrars (CTR). CTRs are trained professionals who have a detailed knowledge of oncology (the study and treatment of tumors), coding and rules. They are also experienced in medical record review and know how to check for, and find, any missing information essential to the patient’s cancer diagnosis and/or treatment.
If Cheryl’s hospital has a CTR, that person will thoroughly review the data before entering it into the hospital’s cancer registry and code it according to national standards. If Cheryl’s hospital does not have a CTR, the LTR will assign one to abstract and code the data from Cheryl’s medical records.
The LTR collects data from any place a cancer patient might have been diagnosed or treated, a list which currently stands at more than 500 facilities, including out-of-state facilities.
– If Cheryl was diagnosed at one hospital and referred to another hospital, or a non-hospital facility for treatment, her medical records at both places would be abstracted, coded into an electronic file and submitted to the LTR.
– If Cheryl was referred to a freestanding radiation center to get radiation therapy and then to an oncology office for chemotherapy and hormonal therapy, that information would be included.
– If Cheryl went to a healthcare facility in another area of Louisiana, the LTR’s regional staff would obtain the information from that facility.
– And if Cheryl got a consultation at an out-of-state hospital, such as M.D. Anderson, the LTR will get the data from the Texas Cancer Registry through an interstate data exchange. The LTR has data exchange agreements with population-based cancer registries in 43 states and 4 US territories, which send information on Louisiana cancer patients to the LTR twice a year.
Data Verification and Consolidation
After the LTR obtains data from all the healthcare facilities involved with Cheryl’s case, its staff verifies the coded data with notes, in all the source records, and then puts the information into one single, consolidated record. That record then undergoes additional strict quality control measures to make sure the data are as correct as possible. Data must meet national standards for submission to the Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) and to the National Cancer Institute (NCI) Surveillance, Epidemiology and End Results (SEER) program. De-identified data are submitted twice a year and, in Louisiana, that amounts to more than 28,000 cases a year.
All cancer case data, including Cheryl’s, is de-identified before submission, meaning a patient’s name, street address, Social Security number and other personal information is removed. Identifying information in the file at LTR is kept to ensure that all the medical records are being collected for the same person and that a cancer case is not counted more than once. Identifying information is not needed by the national programs, who are measuring state cancer rates, trends and issues in order to determine cancer funding, policies and more. They do not track individual cases.
Anyone who shares a patient’s information with someone who is not allowed to see it, is committing a Health Insurance Portability and Accountability Act (HIPAA) violation and can be punished both criminally and civilly.
The End Result
The final NPCR and SEER report is called “United States Cancer Statistics: Incidence and Mortality Web-based Report (USCS).” The interactive visualization of this data can be accessed here. LTR publishes the combined cancer data in an annual cancer report that can be found here. This information is available to everyone, including patients, the general public, legislators, health experts, researchers and all those working to fight cancer in Louisiana.