In a paper published in the Annals of Family Medicine, the leaders of the electronic Primary Care Research Network (ePCRN), the NIH-funded effort, describe the software model they developed as being designed to "enhance the growth and to expand the reach of PBRN research." The model is now being piloted in Europe.
PBRNs, which are promoted by primary care societies and receive some government funding, are designed to engage physicians in real-world research that can answer important questions they have, while promoting the translation of new research findings into clinical practice. There are now 150 PBRNs encompassing about 67,000 physicians in the U.S.
Kevin Peterson, MD, lead author of the paper and director of the center for Primary Care Research at the University of Minnesota Medical School, said that most research is currently done in academic medical centers, which treat a minute portion of patients who need care.
[For more on the role of EHRs in clinical research, see Health IT's next challenge: Comparative Effectiveness Research. ]
"The best research is done in the setting where the findings are going to be applied," he told InformationWeek Healthcare. "So what this [software model] does is allow us to get the clinical practice engaged in research."
The EHRs that primary care doctors use are not designed for research. But ePCRN has developed a "practice clinical desktop" as part of its software that can be used to mine the requisite data for PBRN studies. It does so by extracting XML data either from a data warehouse that's part of an EHR system like Epic or one that ePCRN supplies to EHR users who don't have data warehouses. In addition, ePCRN has developed ways to match disparate medical terms to standard concepts.
Besides the practice clinical desktop, other components of the ePCRN software include the PBRN director workbench, which supports data governance and business rules; the research workbench, which tracks data collection and passes study information to PBRNs and practices; and the administrative services package, which registers and tracks practices, assigns research queries, and adjusts distributed queries to match version differences in the clinical desktop package.
Specialized applications are required for large-scale clinical trials, Peterson noted; but ePCRN's software, which is designed for a federated model of data aggregation, is ideal for mining data from a variety of different EHRs to answer "simple questions" in primary care. Moreover, he said, the same method can be used to view electronic data that originates in non-primary care settings such as pharmacies and long-term-care facilities.
The big stumbling block in the U.S. -- but not in the U.K. -- has to do with persuading EHR vendors to let practices "dump" data into the ePCRN application at a reasonable cost. ePCRN already has agreements with Epic, eClinicalWorks and some other vendors, but is encountering problems with other firms, Peterson said.
The federal government has launched a program to expand comparative effectiveness research that might improve the quality and lower the cost of care. Although ePCRN is not yet part of that effort, Peterson noted that harnessing EHRs in PBRNs could help advance comparative effectiveness research. Eventually, he said, PBRNs could be involved in prospective as well as retrospective studies, but those will never replace the big randomized controlled trials that use centralized databases.
Clinical, patient engagement, and consumer apps promise to re-energize healthcare. Also in the new, all-digital Mobile Power issue of InformationWeek Healthcare: Comparative effectiveness research taps the IT toolbox to compare treatments to determine which ones are most effective. (Free registration required.)