Researchers are responsible for covering the costs associated with their request. So what is the price for using RISE data? “Project fees are determined based on the complexity of each project, translating into effort,” says Dr. Liao. That means the cost ranges widely. “A variety of pathways [are available] to assist requestors,” she continues.
Gabriela Schmajuk, MD, is the rheumatology lead at the UCSF Data Analytic Center. Her center worked on several abstracts being presented at the 2019 ACR/ARP Annual Meeting. She says the investment in RISE data presents a rare opportunity for researchers. “RISE is a unique resource because it automatically extracts and aggregates all EHR data from participating practices. The data, which primarily come from small practices, cover a segment of rheumatology care that is not often studied because most rheumatology data emanate from academic centers.”
The treasure trove that is RISE data will continue to grow. Jinoos Yazdany, MD, MPH, chair of the ACR Registries and Health Information Technology Committee since 2017, says efforts are underway to build the capacity to conduct more advanced analytic projects. “The first stage was getting the data from over 300 sites and dozens of different EHR systems clean, validated and organized for research. Now we are moving into advanced analytics, whereby we will be able to take this big data and use techniques, such as artificial intelligence and natural language processing, to extract and study richer clinical concepts. I am excited to be working with the incredibly dedicated RISE team, all of whom share a vision of the future of rheumatology and what it takes to advance the evidence base in our field.”
The ACR is also working to expand the RISE data set through the incorporation of claims data, such as Medicare.
Drs. Yazdany, Schmajuk and Liao will share more details and answer questions about the RISE registry, the process to request RISE data for research and the discoveries being made with RISE data in a session at the 2019 ACR/ARP Annual Meeting on Wednesday, Nov. 13, Using the RISE Registry to Improve Practice & Research.
Real-World Research
The breadth of research that can be done using RISE data will also be on display at the 2019 ACR/ARP Annual Meeting in Atlanta, with nine abstract presentations scheduled.
Zara Izadi, a PhD candidate in epidemiology at UCSF, will present her study, “The ACR’s Rheumatology Informatics System for Effectiveness (RISE) Demonstrates Improvements in Many Measures of Quality of Care between 2015 and 2017.” The study examined changes in performance on eight quality measures among dozens of RISE practices over a two-year period.
