The National Institutes of Health (NIH) defines a patient registry as “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes.” As Nancy Kadish, Ciox’s Vice President of Clinical Research and Data Abstraction, pointed out in a recent article, growing trends in disease prevention management, evidence-based healthcare, and population health are fueling the move to data-driven health. Patient registries are powerful tools in this healthcare environment – and at the heart of the registries is the data collected and the professionals who ensure the quality of that data.
While there are numerous patient registries, two of the most prominent ones started more than 50 years ago – Cancer Registries and Trauma Registries. I have been lucky enough to work in both, starting as a trauma registrar and then expanding my skills to transition to cancer registry. From the perspective of someone who has worked in both fields, I have seen the similarities and differences between the two registries.
A trauma registry and a cancer registry are both built upon data that is collected, managed, and analyzed for a specified purpose
Cancer registry data is used to monitor and improve cancer treatment, conduct research, and develop cancer prevention programs. Trauma registries have played a crucial role in the substantial decline in death and disability rates from injuries. These registries cannot meet their objectives without accurate, comprehensive data.
Both cancer registries and trauma registries provide data at the state and national levels
Accredited cancer centers and trauma programs are required to submit data to the state (monthly) and the American College of Surgeons (annually). Submitting high-quality data is critical to improving the care of cancer and trauma patients nationwide.
Technology is having a greater impact on registries and the role of registrars
With the increasing use of technology, there is more data available – enhancing the role of cancer and trauma registrars to include more focus on data auditing and analysis. For example, natural language processing (NLP) can be used to extract data, but subject matter experts are still needed to validate the data.
Cancer registry administrators must perform follow up
One difference is the timing of abstraction. Trauma registry abstracting is performed concurrently. It can start on the day of admission and could be completed within a day of discharge with no follow up required. Cancer registry abstracting, however, is more retrospective. Cancer registrars abstract continually until treatment is completed – and then on a yearly basis after for follow up. Follow up continues until the patient is 100 years old or expires.
Staging vs. Scoring
This is one area where specialized knowledge and experience is required. Cancer registrars must have the skill set to stage the patient by using the information in the medical records to determine how much cancer is within the body and if it has spread. Trauma scoring uses several data points found in the patient’s record to determine the prognosis of trauma patients.
Trauma and cancer registry credentials are specialized
It probably goes without saying, but credentials for cancer and trauma registrars are different. The National Cancer Registrar’s Association issues the Certified Tumor Registrar (CTR) credential and registrars abstracting for hospitals accredited by the American College of Surgeons must be CTRs. The Certified Specialist in Trauma Registries (CSTR) is a voluntary credential issued by the American Trauma Society (ATS). However, more and more hospitals are requiring trauma registrars to hold the CSTR credential.
While the two registries are distinct, there is one key similarity – both depend on data information specialists, the credentialed registrars, to ensure the right information is extracted so providers and health officials can conduct the important research that will lead to greater prevention, treatment, and outcomes for cancer and trauma patients. If you work at a cancer registry, consider expanding your skillset to trauma. And trauma registrars, take it from me that adding the CTR credential is a great way to progress in your career.
Ciox offers oncology data services and trauma registry support. Contact us at firstname.lastname@example.org.