Nationwide Ehr-linked Database Of Real-world Patients Aids Rheumatologists

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Other databases either did not capture information directly from the EHR, leading to risk of bias in which patients were captured, or had restrictive policies for data access.

PROPOSAL

“United Rheumatology Normalized Integrated Community Evidence allows for access to real-world evidence EHR data that can be analyzed to address specific research questions in the real-world community rheumatology setting,” explained Dr. Max Hamburger, founder, executive chairman and chief medical officer of United Rheumatology.

“Currently, the best clinical paradigm for treating patients with rheumatic disease is the use of a treat-to-target strategy wherein the activity of a patient’s disease is measured at each visit and trends can be identified to guide shared decision making about changing treatment,” he continued.

“Although the EHR could capture that information for an individual patient, encouraging clinicians to routinely capture the data required for such an approach has been challenging.”

UR-NICE addresses this challenge through the ability to gather data across clinicians, practices and ...
... locations across the country to evaluate clinicians’ performance, gain insights as to the best clinical approaches, and yield insights on how to evolve care toward better value, he added.

“Thus, the data housed in UR-NICE provides direct insight into the outcomes of patients across that country that serves as the data source, or the life-blood, of value-based care initiatives designed to improve individual-level patient outcomes and reduce the cost of care,” he said.

UR-NICE allows direct capture of a wide variety of clinical data from patients across the country and houses it in a single repository. Clinical questions can be asked and answered by querying and analyzing the data of 1.8 million active rheumatic disease patients.

Critically, this data is from the real world, not from clinical trials. This is important, since the phenotypes, or presenting clinical features, of patients in clinical trials that are designed to get medications approved, versus those of patients in the real world, are quite different.

“For example, in a recent study more than 90% of patients with rheumatoid arthritis (RA) in real-world registries would not have been eligible to enter the clinical trials that led to the approval of each of the major medications used to treat the disease,” Hamburger noted. “Patients in clinical trials tend to have much more florid disease.

“Therefore, even after a medication is approved, we lack information as to how real-world patients will respond to new medicines in terms of treatment effects, side effects and the patient experience of medication use,” he continued. “Data from UR-NICE is critically important to help fill in these gaps in understanding how real-word patients, rather than their clinical trial counterparts, respond to treatment.”

One recent project allowed assessment of the three-month, real-world effectiveness of a medication for RA. Prior to this analysis, understanding of the medication response at that critical time-point for treatment-to-target decision-making had been unclear.