On Saturday, leaders from a variety of fields, including epidemiology, computer science, clinical informatics, and public health, came together for the annual Clinical Research Conference — Big Data: Analytics, EMR, Registries and Beyond. The international faculty presented a series of updates from various data sources and demonstrated how this information can be leveraged, not only for rheumatology research purposes, but also to improve patient care.
As part of the morning session, Jinoos Yazdany, MD, MPH, updated attendees about the latest from ACR’s Rheumatology Informatics System for Effectiveness (RISE) registry, which aims to capitalize on electronic health record data to improve patient care. As one of the volunteer leaders of the registry, Dr. Yazdany, Chief of the Division of Rheumatology at the University of California, San Francisco, Zuckerberg General Hospital, said that while it’s still young, the data collected and analyzed thus far has already been beneficial to the rheumatology field.
“The RISE Registry reimagines rheumatology for the digital age,” Dr. Yazdany said.
She shared with attendees the four “Vs” that guide the data collection process — velocity, volume, variety and veracity.
When it comes to velocity and volume, Dr. Yazdany said, RISE has enrolled 1,065 active rheumatology providers at 395 practices in its first five years — more than one-third of the rheumatologists in the United States. Data from electronic health records is uploaded nightly. In addition, RISE creators wanted to ensure variety, so data is collected on all rheumatologic conditions — not just commondiseases such as RA or lupus.
“This is exciting,” Dr. Yazdany said. “We’re starting to see significant data on our rarer diseases. Things like IgG4. We’re approaching the point where we’ll be able to do real research on these conditions.”
Perhaps the hardest “V” in the equation is veracity.
“I’ll be honest,” Dr. Yazdany said. “EHR data is messy.”
To combat this, RISE performs data cleaning at three levels, starting with providers to improve the quality of their documentation. RISE also works with EHR vendors to improve standardization of software. Finally, data analytic centers process the information to look for outliers in the data.
Dr. Yazdany then shared an overview of some of the projects to come from the RISE registry thus far.
For example, researchers have used RISE registry data to look at hydroxychloroquine dosing. Dr. Yazdany said the data revealed 1 out of 10 patients — primarily women — was receiving higher-than-recommended doses of hydroxychloroquine.
“We saw this as an opportunity to develop a new quality measure,” she said. “We took it to CMS, and it will be added this year.”
Dr. Yazdany also discussed how the registry is being used to accelerate patient recruitment for studies and clinical trials, something that is currently being tried with the GRASP (Genome Research in African American Scleroderma Patients) project. RISE data is used to identify patients that meet specific phenotype requirements, and their providers can connect those patients with researchers, she said.