For many years, the Kaiser Permanente Division of Research (DOR) has specialized in creating disease registries for common medical conditions such as cancer, diabetes, viral hepatitis and HIV. A large number of clinicians and researchers make use of these data registries to better understand common medical conditions and ultimately improve systematic care for these patients.
Now, DOR scientists have figured out an innovative way to target care for patients with uncommon medical conditions, those occurring among several hundred or even several dozen patients.
Lisa J. Herrinton, PhD, a DOR senior research scientist and epidemiologist, figured out a low-cost, low-tech way to pull together data on rarely occurring conditions, so that chiefs in specialty care can target their monitoring and ensure that patients with rare conditions do not fall through the cracks.
“This workflow innovation will lead to greater ability by front-line clinicians to engage in quality improvement, and increased accountability of care,” Herrinton said.
Herrinton will be honored with seven other innovators on May 30 in Denver with Kaiser Permanente’s national Innovation Fund for Technology Broadly Applicable Innovation Award, for developing a simple way to pull together disease registries for specialized medical care.
With a grant from the Innovation Fund for Technology, Herrinton and her team — Liyan Liu, MS, and Andrea Altschuler, PhD, of DOR — built a platform for “crowdsourcing” clinical specifications from physicians, so that the data can be captured from HealthConnect (Kaisier Permanente’s electronic medical record) and organized in a simple format that physicians can use.
The result is about a dozen mini-registries, including for rare conditions such as sickle-cell anemia; a complication of cataract surgery called endophthalmitis; abdominal aortic aneurysm; and teenagers with cancer transitioning to adult care.
“We opted for very simple technologies, including SurveyMonkey and Excel spreadsheets, that most everybody understands,” Herrinton says. “The specialties have to provide their own problem statement and clinical expertise. They even have to help us write the algorithms! But we kept it simple.”
For example, the chief of rheumatology wanted a comprehensive list of several hundred gout patients among Kaiser Permanente Northern California’s 3.4 million members. Patients suffer needlessly when gout is not treated consistently; they have more emergency room visits, hospital admissions, and prescriptions for an expensive medication called colchicine.
The chief filled out Herrinton’s intake form in SurveyMonkey. Within two days, Herrinton and her team were able to write an algorithm for creating an Excel spreadsheet of gout patients. The chief was then able to directly contact those gout patients and make the case for improved pharmacological management of their care.
“He was so happy to get the data,” Herrinton says. “He said, ‘I’ve been trying to get this for three years.’”
The mini-registries can be updated automatically as often as necessary (such as monthly) and e-mailed to clinical stakeholders.
Herrinton hopes that this work will lead to systematic quality improvements in specialized patient care: “All I wanted to do was bring data to clinical care in the same way that Walmart brings data to retail.”