Each year, more than 13,000 Mississippians are diagnosed with cancer. While that is a sobering fact, it is a hard number, thanks to the work of the Mississippi Cancer Registry (MCR).
In 1993, the Mississippi Legislature awarded funding to the Mississippi State Department of Health (MSDH) to develop the MCR. Today, the Centers for Disease Control and Prevention and the University of Mississippi Medical Center (UMMC) in Jackson along with the MSDH support the program through a cooperative agreement.
The MCR serves as the state’s comprehensive resource for cancer data. Physicians, hospitals, pathology laboratories and other healthcare facilities must report current data to the registry regarding a patient’s diagnosis. This information is collected and maintained in the registry’s confidential database.
The MCR requires that the data collected include information that indicates diagnosis, stage of disease, medical history, patient demographics, laboratory data, tissue diagnosis and radiation, surgical or other methods of diagnosis or treatment for each cancer diagnosed or treated in Mississippi.
(The regulations established by the MSDH require quarterly reporting. However, the MCR is requesting that facilities report monthly.)
With this information, healthcare professionals can anticipate future treatment and recovery needs, develop programs to detect cancer earlier and activate prevention programs to reduce occurrence of the disease.
And, this work is important outside of Mississippi. The MCR shares its information with the CDC as well as the North American Association of Central Cancer Registries, which pull together the information from all reporting states.
In short, this work may very well provide the research stimulus to find a cure for cancer. This is a fact not lost on the state’s cancer registrars.
April 13-17 was National Cancer Registrars Week, which spotlights the work of cancer registrars. Deirdre Rogers, MS, CTR, said she hopes the week, which had the theme “Cancer Registrars…Rock Solid,” helped get the word out about what cancer registrars do and how important it is.
“By honoring cancer registrars, I hope people will recognize that cancer registry is a legitimate job, and that what we do is a help to cancer patients,” said Rogers, a Mississippi native. The work of the MCR is challenging, One of the main issues the MCR faces is confidentiality. Cases are reported electronically, though facilities with fewer than 25 cases annually may report in a paper format, Either way, registrars must be careful.
The MCR is considered a public health authority, giving them some exemption from the requirements of HIPAA. However, this does not give MCR the right to violate patients’ right to privacy.
“Having cancer does not make a person a public record,” Rogers said.
She added that while the MCR makes available a wealth of data, it stops short of providing information that may “out” a cancer patient.
“We don’t release information that would allow people the chance to go, ‘Oh, that must be Joe Smith.’ We take confidentiality very seriously,” Rogers said.
The MCR maintains a staff of 12 workers. However, many hospitals have their own cancer registrars, allowing them to look at cancer information specific to their facility. For instance, Forrest General Hospital in Hattiesburg has three cancer registrars — Juliet Hinton (manager), Jena Hopkins and Daphne Nix.
These cancer registrars are data management experts, specialists in a specialized field.
“Cancer registrars are the foundation of cancer statistics,” said National Cancer Registrars Association president Lynda Douglas, CTR. “Physicians, researchers, healthcare administrators and standard setters rely on accurate cancer data every day – a commitment cancer registrars fulfill.”
Contact MBJ staff writer Wally Northway at email@example.com.