Sanford Health is well known for its world-class healthcare and impact on rural communities. Alongside the doctors and nurses that see patients face-to-face every day, there are also dedicated researchers who work behind the scenes to guide the organization as well.
One such team includes the men and women working at the cancer registry.
Evidence-based recommendations
“If you have ever heard of a national cancer statistic, that data comes from the cancer registry,” said Rebecca Renfrew, Sanford Fargo’s cancer registry manager.
Cancer is a reportable disease by law, which means statistics about cancer must be reported by hospital systems to the states they serve, and that data goes into a national database in order to monitor the disease. The Sanford Enterprise Cancer Registry collects cancer data for seven locations across the organization, including Sanford Roger Maris Cancer Center in Fargo. That data does not only go into the mandated databases, however.
“Our research team uses our data quite a bit,” said Jamie Husher, Sanford Health’s senior director of health information management. “You’re sitting on this treasure trove of information, but it’s really how you use it.”
One of the more notable changes to cancer care nationally has been the recommended age for colonoscopy screenings dropping from age 50 to 45. That came in part due to the data from the national cancer registry. Similarly at Sanford, data can be used to pinpoint different patient trends and needs. For example, Sanford Health’s collected data showed that Sanford Fargo had more late-stage lung cancer patients than some other cancer programs, which led to impactful change at Roger Maris Cancer Center.
“That was really the driver to improve lung cancer screening efforts in this region,” said Renfrew. “The data was also used internally to justify additional equipment, like a new PET CT scanner.”
The cancer registry’s data has also been used to show how far rural healthcare patients must travel to seek treatment, which in turn led to Sanford Health applying for travel and lodging grants from the American Cancer Society.
Data is also used by the cancer research team to determine if they can move forward with clinical trials.
The cancer registry provides information that is constantly being used to make informed, analytics-driven decisions.
“We sit in the oncology and Edith Sanford Breast Center meetings that are at the system-wide level for administrators, and physician councils as well,” Husher said. “So we regularly take curated sets of data to those meetings that have gone through human review and the standards applied to it.”
“A lot of people have anecdotal evidence or their own experiences, so it is interesting to bring the data,” said Renfrew. “Someone might say, ‘Well, I think this is happening,’ but then we can actually show it.”
Using data to improve care
Overall there are about 250 data points collected on each new case, all HIPAA-compliant and within the medical record, meaning the cancer registry team does not collect patient data on their own. Everything comes from their providers. These can be as broad as age, weight and hometown, or as detailed as diagnosis and treatment information.
“That helps at that national level when you’re saying, ‘How effective was chemo before surgery or do you want to have surgery first, then chemo?’ said Husher. “It’s collecting a good amount of information to study and assess survival rate, treatment efficacy, and what’s going to be the best course for a patient.”
National data can be slow to compile, but internal data moves a bit faster.
“We at Sanford hold ourselves to a pretty high standard to get that data abstracted or available as quickly as possible,” said Renfrew. “National statistics were just published for 2023, but the benefit of the hospital registry being robust is that we can get access our own data more quickly.”
It can then be used by physicians who want to study more specialized sets of data, such as a Participant User File (PUF) from the National Cancer Database (NCDB). Sanford submits data to the NCDB. That data has subsequently been used in supporting research papers like those from Anu Gaba, M.D., a hematologist oncologist at Roger Maris Cancer Center.
“She’s published papers from that data. Really good work. For example, on racial disparities for Native Americans with breast cancer because that population is smaller. So we’re able to get that and amplify it with that larger data set,” Renfrew said. “Knowing that is registry data is just incredible to bring back to the team and show them that this is what their work is contributing to.”
Meaningful work
Those contributions may not always be obvious to the general public, but it is a big reason the data collectors at Sanford’s cancer registries do what they do. There are just 24 employees on the team, including nine working with Renfrew in Fargo. But their work impacts countless patients across the region and the nation.
“Registrars are meticulous and passionate,” said Renfrew. “Even though we’re behind the scenes, and we don’t see patients, it is extremely meaningful work. That’s absolute satisfaction to be able to know that they’re contributing to studying cancer and prevention.”
“Changes in screening guidelines or when cancer treatments shift, that is informed through our registry data,” said Husher. “It does take time, but I think we see it often enough that those things are pretty meaningful to see.”
Learn more
- Early-phase cancer treatments available at Sanford Health
- Clinical trial gives cancer survivor a chance to help others
- Sanford Research earns NIH grant to study rare bone cancer
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Posted In Cancer, Fargo, Research
