Cancer care by the numbers
Have you ever heard of a cancer registrar? By tracking data around cancer care at specific cancer centers, they are an integral part of cancer care here on Cape Cod and around the country.
Cape Cod Healthcare registrars Hester Grue, CTR; Deborah Crockett-Rice; CTR, Holly Seaver, RN, BSN, CTR; and Carol McDonald, CTR, are certified cancer registrars who make up the “hub of the wheel” in cancer care and programs at Cape Cod Hospital and Falmouth Hospital.
Their collection and reporting of local cancer cases, along with their colleagues around the country, allows the American Cancer Society (ACS), Centers for Disease Control and Prevention (CDC) and other national organizations to publish national statistics about cancer care, advances in treatment, declines in mortality rates and other information
“The work we do is such an integral piece of collecting all kinds of data for physicians and organizations to look at,” said McDonald.
National Cancer Registrars Association (NCRA) Week is April 4-13 this year and the theme is “Cancer Registrars: Hidden Jewels of Cancer Care.”
“Quality cancer data is central to the nation’s fight against cancer, and cancer registrars are the first link in capturing that data,” said Barbara J. Deamon, BS, CTR, president of the NCRA in a National Cancer Registrars Week press release. “National Cancer Registrars Week provides an opportunity to acknowledge the central role registrars play in the research, treatment, and prevention of cancer.”
The registrars’ information gathering begins with reviewing the medical record of every patient who comes to Cape Cod Hospital and Falmouth Hospital with a cancer diagnosis. Each cancer has its own numerical code and, together with the pathology reports, and along with all of the other medical information, they enter it into their data base. They review patients’ surgery and treatment notes, follow-ups and recurrences.
Not Just Statistics
The registrars have a deep caring for every patient their information touches.
“Even though we are dealing with statistics and putting all this information into computers and regional, state and national data bases, we still have an emotional connection to these patients”, said McDonald. “We go to the tumor boards, we talk with the doctors, and we may not physically see the patients, but they are more than another statistic to us. They are the people we are helping through clinical research and we’re helping them to get the best care they can get.”
The data the registrars contribute to the regional, state and national statistics, ultimately informs the patient and helps them make decisions about their treatment, according to Seaver.
The exact number of patients they have reviewed over the years is difficult to pin down because of all the intricacies and nuances of statistics, but Grue estimates they have well over 10,000 patients in the Cape Cod Hospital and Falmouth Hospital registry.
While the registrars’ roles are based on numbers, statistics and reports, they overlap with other areas of cancer care that utilize their expertise in understanding the results of patients’ treatment, outcomes and survivorship.
Some of their other responsibilities include:
- Crockett-Rice and Grue attend the hospitals’ tumor board meetings [Devising a battle plan for fighting cancer]. Crockett-Rice attends a weekly meeting at Falmouth Hospital and Grue attends from one to five meetings per week at Cape Cod Hospital. They create a summary of the medical information of each patient who will be presented at the meeting and are responsible for recording the patient’s treatment recommendations by the board.
- The registrars are members of the Cape Cod Healthcare Cancer Committee. They work with the Quality Assurance and Performance Improvement departments reviewing outcomes to see if treatment is compliant with national guidelines. This information includes age group, gender, site and stage of the cancer, treatment and survival.
“Cape Cod Healthcare does as well, if not better, than other hospitals state-wide and nationally,” said Grue.
- They also participate in the Cancer Committee’s community prevention and cancer screening programs. They have participated in breast cancer walks and hand out information pamphlets.
- McDonald, Crockett-Rice and Grue create special reports when Cape Cod Healthcare physicians request them.
- The registrars prepare in-depth, detailed reports for the American College of Surgeons, (ACOS), Commission on Cancer (COC),and the National Accreditation Program for Breast Centers, (NAPBC). This includes information for surveys that are done by the ACS and NAPBC when representatives make a visit to ensure Cape Cod Healthcare cancer programs are meeting the standards.
- Crockett-Rice is the tumor registrar for Falmouth Hospital and she, along with Peter Hopewood, MD, FACS, a Falmouth Hospital surgeon and Cape Cod Healthcare Cancer Committee chair, established the cancer resource library at the Falmouth Public Library. The library was written up in the Best Practices for American College of Surgeons Cancer Programs.