Meet the Mother of All Patient Registries
Is that what AHRQ is trying to accomplish with its Registry of Patient Registries?
Berliner says she's not the right person to answer that question. But, she adds, "my understanding is similar to yours. What we're doing is the first step of what you said. You're right. There are a lot of these registries that already exist. You have to know who has the data…We're just trying to connect people have the answers with the people who have the data."
Berliner says RoPR has four goals:
- Assist registry sponsors to rapidly record in RoPR relevant information on outcomes and common data elements
- Reduce redundancy of registries
- Increase the value of new registries that use the standardized data elements, and
- Identify registries capturing relevant or similar information for collaboration or linkage.
It's hard to say how quickly the RoPR project will catch on, or if it ever will. The American College of Surgeons, which has more than 500 hospitals and hundreds of data points in its National Surgical Quality Improvement Project wouldn't say. But an ACS spokesman says the ACS is in the process of entering NSQIP data into the RoPR database.
One tremendous potential benefit from such a registry is to tear down the Tower of Babel that various researchers are using to measure their outcomes today, and move toward a common language or format. "Today, it seems, everybody has their own definitions," Berliner says. "[There are] cases in which people use different words to describe the same thing, and use the same words to describe different things."
At a recent meeting of Academy Health, Berliner presented slides in which she gave examples.
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