The Jeffrey Modell Foundation in New York recently launched software that aims to better inform the healthcare world on primary immunodeficiency disorders, harnessing data from medical records that could significantly improve early detection.
It could save the global health systems up to $40 billion in unnecessary healthcare costs if it helps identify patients early on, according to a three-year study by Immunologic Research.
Such disorders are often devastating, not just because they’re difficult to treat but equally, if not more, difficult to detect, the foundation explained.
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“The problem is it’s undiagnosed with 90 percent of patients who get this,” said Vicki Modell, who with her wife husband, Fred, started the foundation in honor of their son Jeffrey, who died at 15 from a primary immunodeficiency. Some three to six million people go undiagnosed each year, she said, citing NIH figures.
In 2012, the Modell’s launched the multimillion dollar effort to address the such disorders, and the recent software, known as Spirit 2.0 Analyzer – software for primary immunodeficiency recognition, intervention and tracking – is being rolled out to payers and providers this year.
“We matched up 10 ICD-9 codes manually,” Modell said. “And we found many patients within that. So someone said ‘Why don’t you create some software?’”
According to the foundation, the software, co-developed with consultancy Xcenda, can screen – not diagnose or detect – up to one million patients in 30 minutes. And the earlier detection can occur, the more likely a patient with more mild but nevertheless persistent symptoms can obtain treatment, saving money and improving the quality of life of the patient.
“Primary immunodeficiency is an umbrella for about 150 or so disorders,” Vicki Modell said. “They range in severity from mild to middle, gastro and auto immune and all the way up the spectrum. It really ranges in severity, and we want to pick up the patients from mild to middle. The others are so ill that their symptoms show. This is the group in the middle. This is the group we want to get. They can be treated.”
Both functionality and efficacy of the software was beta-tested during the study, using the IMS Health LifeLink Claims Database. That include medical and pharmaceutical claims for more than 60 million unique patients from 90 health plans across the U.S. The sampling of more than 2 million patients in the IMS database showed that 1:4478 had two more more of the 10 warning signs developed from ICD-9 codes, while 1:583 were scored “high risk,” according to the study. The numbers were consistent with NIH estimates of incidence.
Records of PI patients were examined by physicians with the Jeffrey Modell Centers Network one year before and one year after diagnosis. Results showed “significant reductions in acute and chronic infections, pneumonias, hospital and emergency room visits, days on antibiotics, days in the hospital and school-work days missed,” according to the study.
The software is currently being piloted by three small health plans and an academic medical center in the Midwest, according the foundation, which is offering its use for free.
“It’s for the greater good, and our hope is to get the insurance companies to use it. They have nothing to lose,” Fred Modell said. “In fact, they can save a great deal of money because these patients are very expensive if undiagnosed.”
