Health & Medical

Nationwide EHR-linked database of real-world sufferers aids rheumatologists

Not too way back, Hauppauge, New York-based United Rheumatology had restricted alternatives to straight seize the expertise of sufferers throughout the nation to reply vital scientific questions.


Although a given follow would possibly seize information in its personal digital well being report, even the most important of practices didn’t have sufficient sufferers to know the real-world response to drugs or to seize the info from practices throughout the nation as a part of a value-based care initiative.

Other databases both didn’t seize info straight from the EHR, resulting in danger of bias wherein sufferers had been captured, or had restrictive insurance policies for information entry.


“United Rheumatology Normalized Integrated Community Evidence permits for entry to real-world proof EHR information that may be analyzed to handle particular analysis questions within the real-world neighborhood rheumatology setting,” defined Dr. Max Hamburger, founder, government chairman and chief medical officer of United Rheumatology.

“Currently, the most effective scientific paradigm for treating sufferers with rheumatic illness is using a treat-to-target technique whereby the exercise of a affected person’s illness is measured at every go to and traits will be recognized to information shared choice making about altering remedy,” he continued.

“Although the EHR may seize that info for a person affected person, encouraging clinicians to routinely seize the info required for such an method has been difficult.”

UR-NICE addresses this problem via the power to collect information throughout clinicians, practices and areas throughout the nation to judge clinicians’ efficiency, achieve insights as to the most effective scientific approaches, and yield insights on methods to evolve care towards higher worth, he added.

“Thus, the info housed in UR-NICE supplies direct perception into the outcomes of sufferers throughout that nation that serves as the info supply, or the life-blood, of value-based care initiatives designed to enhance individual-level affected person outcomes and cut back the price of care,” he stated.

“United Rheumatology has created an enterprise software program platform, Capricorn, as a companion to UR-NICE to assist direct affected person engagement through textual content or e-mail to facilitate seize of patient-reported end result measures and/or patient-reported expertise metrics.”

Dr. Max Hamburger, United Rheumatology

UR-NICE permits direct seize of all kinds of scientific information from sufferers throughout the nation and homes it in a single repository. Clinical questions will be requested and answered by querying and analyzing the info of 1.8 million energetic rheumatic illness sufferers.

Critically, this information is from the true world, not from scientific trials. This is vital, since the phenotypes, or presenting scientific options, of sufferers in scientific trials which can be designed to get medicines accredited, versus these of sufferers in the true world, are fairly completely different.

“For instance, in a latest examine greater than 90% of sufferers with rheumatoid arthritis (RA) in real-world registries wouldn’t have been eligible to enter the scientific trials that led to the approval of every of the most important medicines used to deal with the illness,” Hamburger famous. “Patients in scientific trials are likely to have way more florid illness.

“Therefore, even after a drugs is accredited, we lack info as to how real-world sufferers will reply to new medicines when it comes to remedy results, unwanted side effects and the affected person expertise of remedy use,” he continued. “Data from UR-NICE is critically vital to assist fill in these gaps in understanding how real-word sufferers, fairly than their scientific trial counterparts, reply to remedy.”

One latest undertaking allowed evaluation of the three-month, real-world effectiveness of a drugs for RA. Prior to this evaluation, understanding of the remedy response at that vital time-point for treatment-to-target decision-making had been unclear.

“These capabilities are vital to every of the stakeholders within the rheumatology care ecosystem,” he defined. “Pharmaceutical producers companion with United Rheumatology to ask nuanced, ‘retrospective’ scientific questions that profit sufferers similar to, ‘Among rheumatoid arthritis sufferers with particular phenotypes, similar to sure constructive serologies (antibody blood checks), what’s the response to drug X versus drug Y.'”

Health plans can match illness exercise information with medical and pharmacy claims info to reply questions similar to, “Is it dearer for sufferers to be in average or excessive illness exercise versus remission or low illness exercise?” or “What scientific components or information components predict excessive healthcare useful resource utilization amongst sufferers with illness X?”


With the power to ask retrospective questions from UR-NICE concerning the previous responses to remedy approaches or particular medicines, new questions and hypotheses are developed about how sufferers’ outcomes is perhaps improved by approaching care in another way on a potential foundation.

“Accordingly, United Rheumatology has created an enterprise software program platform, Capricorn, as a companion to UR-NICE to assist direct affected person engagement through textual content or e-mail to facilitate seize of patient-reported end result measures and/or affected person reported expertise metrics,” Hamburger stated. “This info will be dropped at the eye of treating clinicians to tell shared decision-making, for example, concerning the want for remedy modifications.

“In doing so, the system can granularly seize the affected person expertise of the 90 days between workplace visits,” he continued. “The Capricorn platform is totally configured, supporting bespoke information seize necessities that may be leveraged to handle potential questions, together with establishing the influence of value-based care packages on scientific outcomes.”

These packages have introduced collectively well being plans, pharmaceutical firms and United Rheumatology members to exhibit new approaches to enhance sufferers’ situations and decrease healthcare prices.

“One instance is packages that encourage dose optimization of focused immune modulators amongst sufferers with RA or psoriatic arthritis who’ve sustained glorious management of illness to offer solely the exact quantity of remedy required to take care of illness management and eradicate pointless remedy,” Hamburger famous.

“The UR-NICE database helps quite a few EHR distributors to extract information and translate it to a canonical information mannequin,” he continued. “The know-how has been tailored to interface with a number of EHRs permitting practices to proceed to make use of their desired EHR vendor, fairly than requiring using a particular EHR answer to take part in UR packages.”

Capricorn has likewise been designed to “meet practices the place they’re,” providing a spread of integration choices, together with HL7 FHIR, customized file and on-line portal entry. These choices enable practices to take part with information assortment through high-tech or low-tech options, primarily based on their functionality.


United Rheumatology has established a medical coverage committee of members from throughout the nation who’ve written scientific pathways to replicate the method to the care offered within the group’s clinics. These pathways embody a standardized set of disease-specific end result measures and a “commonplace information mannequin” to homogenize assortment on the follow stage.

Additionally, a dashboard has been generated to replicate the efficiency of clinicians from member practices in capturing disease-specific end result measures. The dashboard outcomes create accountability in adherence to the scientific pathways to make sure sturdy information seize and have improved the completeness of UR-NICE information assortment of measures such because the Clinical Disease Activity Index (CDAI) for RA.

It additionally helps transfer practices alongside a continuum of readiness that United Rheumatology has recognized to assist practices put together for the implementation and adoption of value-based care packages.

“In a illness like systemic lupus erythematosus – lupus or SLE – the complexity of illness manifestations make standardized information assortment difficult,” Hamburger defined. “A primary step in assembly the acknowledged want for the appliance of treat-to-target ideas in SLE is operationalizing and routinizing the seize of a illness exercise measure.

“By working with nationwide consultants, UR has developed such a measure and integrated its seize into the Capricorn platform to simplify its seize,” he added.


“It is totally vital for the development of care high quality that individual-level information seize be standardized and its assortment routinized as an on a regular basis operate of real-world scientific drugs,” Hamburger acknowledged. “If outcomes aren’t measured, they can’t be in contrast or improved. Yet practices fluctuate of their readiness to undertake the revolutionary methods required to gather such information.

“An in depth implementation plan is important that takes into consideration the sociotechnical interface together with the wants of sufferers and clinic personnel in addition to the tradition of the office to easy the transition to a data- and technology-focused follow mannequin,” he continued. “Developing a street map for the transition from the usual work of the current state versus the usual work required can support this transition.”

An actual-world database requires important curation to optimize the interpretability of outcomes, he added. Simple challenges, similar to practices utilizing completely different models of measure for physique weight (kilos versus kilograms), should be acknowledged and addressed to yield actionable information, he stated.

“Additionally, together with suppliers in programmatic planning phases and visiting the clinic setting, because the pandemic permits, will help determine the influence of diversifications of programmatic methodology that outline the constructive or damaging influence of the distinction between ‘work as deliberate’ and ‘work as carried out,'” he concluded.

Twitter: @SiwickiHealthIT
Email the author: [email protected]
Healthcare IT News is a HIMSS Media publication.

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