Kidney Active Care: Relaying the Benefits of Observation
A kidney cancer surveillance dashboard gives patients a comprehensive snapshot of their disease.
Dr. Phillip Pierorazio, Associate Professor of Urology and Oncology for the Brady Urological Institute, says there are 10–15% of kidney cancer patients who choose monitoring over immediate surgical intervention.
He hopes to raise this number by showing patients who are eligible for active surveillance — or clinical monitoring provided to patients with low grade cancers that are not likely to spread — the application he developed with the Technology Innovation Center: Kidney Active Care.
“The mortality was staying the same and we were potentially doing harm by performing more surgeries,” says Pierorazio.
Over 10 years ago, Johns Hopkins Hospital implemented a kidney active surveillance research program. The program collects data from a registry of patients who have small kidney tumors. Patients in the program either have surgery or are continuously monitored over time. Today, there are over 700 patients in the kidney active surveillance program across three academic medical centers.
“One of the biggest barriers to [active surveillance] is patients and their providers not really understanding the disease,” says Pierorazio. “There’s a knowledge gap.”
Patients often learn of their cancer diagnosis and think the worst-case scenario. They assume that a major surgery is needed in order to live.
With a decade of kidney active surveillance data available, Pierorazio first came to the Technology Innovation Center in 2018 to build a tool that would bridge this knowledge gap through technology.
“Some of them are bad, nasty cancers, but the vast majority are not. It’s about reeducating people about this,” says Pierorazio.
Kidney Active Care is used during urology clinic visits for cancer patients to understand their risks visually. The tool presents objective metrics through graphs and charts, comparing the patient’s data to data of similar patients in the active surveillance program.
When a patient asks how their cancer has changed over time, Pierorazio hovers his mouse over a growth curve to display statistical data without having to look through old notes or reports.
He reviews the patient's history, sometimes years back, and determines if their tumor has grown dramatically. Pierorazo leverages data from the cohort of similar patients to put a treatment plan into place. Seeing the visualization of this data first hand puts the plan into perspective for the patient.
The American Urological Association and the National Comprehensive Cancer Network now support active surveillance as an initial treatment strategy.
“From the data in our program, the thinking about surveillance around the world has changed so that people are much more comfortable watching these small kidney tumors,” said Pierorazio.