Collaborative forms effective model for creation of diabetes registry

Disease registries can be created by different physician practices using separate electronic health record systems despite challenges, according to a new case study reported in eGEMS (generating evidence and methods to improve patient outcomes).

For the study, entitled Developing a Community-Wide Electronic Health Record Disease Registry in Primary Care Practices: Lessons Learned from the Western New York Beacon Community, HEALTHeLINK, the local regional health information organization (RHIO) and others reached out to 98 primary care practices in Western New York serving more than 50,000 diabetic adults to establish a disease registry for the patients.

Some of the challenges included the fact that 20 different EHR systems were involved and that data extracts were inconsistent.

Overall, the project was successful. Of the 98 practices involved from 2011-2013, 87 percent had developed a registry and submitted one extract to the RHIO; these registries were developed to support organized care management of 47,000 diabetes patients. Moreover, 76 percent of them generated registries of sufficient quality to use for quality benchmarks and population health. 

Most of the 13 percent of practices that could not develop a registry were mainly solo practices that used EHRs with low penetration in the Western New York market, which had less incentive to be involved.

Some of the lessons learned included:

  • Establish clear technical specifications for the registry
  • Invest effort in data mapping
  • Develop clear protocols to support practices' staff
  • Address sharing data concerns up front
  • Anticipate that vendors and practices will be overwhelmed but don't speak the same language
  • Understand that vendors have competing priorities

"While development of registries was the immediate goal, another important result of the communitywide registry initiative was that it created a precedent and a roadmap for future efforts using EHR data," the researchers stated. "Leveraging the collaborative partnerships that were forged by this project may be the most lasting and impactful outcome. It is hoped that the lessons learned through this endeavor may benefit other communities, especially those with multiple, disconnected EHRs, to establish unified registries to leverage EHR data for improved care and improved population health."

Disease registries have the potential to improve population and public health through reporting, benchmarking and wide-scale intervention. Legislation is pending that would encourage the use of EHRs to create and expand such registries.

To learn more:
- read the case study (.pdf)