Electronic Registers and Best Practices to Improve Patient Care in Rheumatic Disease

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MADRID—Determining what is a best practice in rheumatology and then implementing improvements based on what you find can be fraught with complexity, an expert said during the 2017 Annual European Congress on Rheumatology (EULAR). Examples are emerging of benchmarking projects in which electronic registers are used to improve patient care, said William Dixon, MD, chair of digital epidemiology at the University of Manchester, UK.

Dr. Dixon outlined how successful benchmarking—which Xerox pioneered in the 1990s to regain ground lost to competitors in the photocopying business—involves asking the right questions and coming up with good answers to those questions. Benchmarking, as he described it, is a seven-step process:

1. Identify what to benchmark;
2. Determine what to measure to assess that benchmark;
3. Identify who to benchmark;
4. Collect the data;
5. Analyze the data;
6. Set goals and develop a plan of action; and
7. Monitor the process.

Whatever is measured should be relevant, important, reliable, unambiguous, feasible in terms of being measured and standardized, valid and able to be acted upon, Dr. Dixon said. But what to measure may not be as clearcut as it seems. Example: In an intensive care unit, mortality is an obvious data point to compare from institution to institution, but what if one unit has a higher patient age and a higher comorbidity burden?

“If we think about rheumatology, what is it that we should be benchmarking that meets all of these criteria?” Dr. Dixon asked.

He said the ACR’s RISE Registry deserves praise for having collected data from about a quarter-million patients and more than 300 doctors in at least 55 practices, according to data presented last year. [Editor’s note: As of June 2017, 719 U.S. providers participate in the RISE Registry, representing more than 1 million patients and roughly 20% of practicing U.S. rheumatologists. RISE has amassed data on approximately 6 million patient encounters.] “[After] you’ve done the plumbing [i.e., set up the EHR software], you don’t have to do any more,” he said. “Those data just flow out to the RISE Registry.”

Other examples: In Portugal, the Rheumatic Diseases Portuguese Register (Reuma-pt) involved creating a core set of data that was considered good clinical practice before the registry was established. There, just the process of measuring for these data led to improved care, Dr. Dixon said.

In Denmark, the Danbio registry could be a model to follow. One of its features is that it allows patients to enter their data in real time before a consultation. Dr. Dixon said it’s a “fantastic example of how we can collect structured data for quality improvement.”