Cancer Registry Best Practices
Why We Do What We Do
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At ERS, we often come across touching stories that remind us of the importance of cancer registry data in fighting the good fight to defeat cancer. One of our client CTRs, Marcia Hodge, shared this personal story with us and we felt it needed to be shared with all CTRs.
As registrars, we are dedicated to our profession and strive for excellence. We believe in the value of our work, yet rarely see the impact of our efforts. Society promotes quantity – we endorse quality. However, with large volumes of work attached to stringent deadlines, we often feel frustrated and overwhelmed. We find ourselves wondering if we, as registrars, are really making a difference in this fight against cancer. Is there value in the cases we abstract?
Some cases tug at our heart for a time; however, reminded of the number of cases yet to be completed, we move on to the next case, and then the next. In our effort to comingle quantity with quality, we risk rushing through our cases, depending on our memory and drop-down boxes, rather than our manuals, and include the barest of details in our text. We remain passionate about the work we do, yet often are unaware of the impact we make. Recently, I had the opportunity to witness firsthand the value of our work, and see that we really do make a difference.
I sat in the clinic with my father-in-law listening to the results of his most recent CT scan. Having progressed through surgery, two rounds of radiation and chemotherapy, as well as an experimental treatment, additional options were limited. Finally, his physician asked if he’d be willing to consider a clinical trial.
“This is the study based on the
data you pulled.”
In reading over the information regarding the clinical trial, I recognized the name of the Principal Investigator responsible for this particular protocol. I commented that I recognized the name and recalled completing a data request for him in the past. The coordinator smiled, “This is the study based on the data you pulled. Your father-in-law will be the first patient enrolled on this protocol.”
I immediately thought back to a couple of years prior when I’d received a request to pull registry data on a particular group of lung patients. These criteria requested was very specific. It was not a routine data request, it was very detailed requiring multiple steps to pull the data accurately. After working on the study myself for some time and not achieving the results I needed, I put in a portal request with our vendor, ERS, to seek help. As always, I promptly received a call from Janet Vogel and we spent another couple of hours working to pull the exact data needed for the study. We were both a little frustrated with the process, but eventually, we had the data pulled and I could return it to the physician.
Although I have always understood the value of registry data, and our contribution to cancer research, I saw this come full circle. I understood even more the importance of complete and accurate data. I understood why well documented text fields are so vital. More than ever I realized that every chart has a name, every name has a story, and every story matters. That is why we, as registrars, do what we do.
by Marcia Hodge, CTR
Director, Registry Operations
UF Health Joint Oncology Program