Developing a Communitywide Electronic Health Record Disease Registry in Primary Care Practices: Lessons Learned from the Western New York Beacon Community

BACKGROUND AND INTRODUCTION: Disease registries, as part of electronic health records (EHRs), have shown promise in improving care and outcomes. However, little is known about how best to implement them across communities, especially in communities that are not highly integrated. The Western New York (WNY) primary care community consists largely of independent practices using at least 20 different EHR products. This paper discusses the processes undertaken to develop a communitywide EHR disease registry in WNY, improvements it engendered, barriers overcome, and the lessons learned. METHODS: HEALTHeLINK, under the Office of the National Coordinator for Health Information Technology Beacon Community Initiative, reached out to 98 primary care practices in the WNY region to establish EHR-based diabetes registries. Working with practices, community partners, and vendors, registry specifications were created. The registry was piloted with practices using one local vendor’s EHR product and then rolled out to other practices, including five other EHR products. Using identified and de-identified registry datasets, quality benchmarking within and between practices and population health management were undertaken. FINDINGS: From 2011 to 2013, the WNY Beacon Community assisted 98 practices (344 providers) serving over 50,000 adult diabetic patients. A major focus was on EHR registry development across diverse systems, and overcoming the challenges this presented. The Beacon diabetes registry was implemented at 85 of the 98 targeted practices. Of these registries, 65 met the criteria described in a later section for quality benchmarking and population health management purposes. Practices received quarterly benchmark reports summarizing their performance on key diabetes quality metrics and were compared to community practice averages. Practices used their registries for population health management by identifying and targeting patients in need of follow-up or specific diabetes-related care. DISCUSSION AND CONCLUSION: The creation of the registry infrastructure required unified registry technical specifications as well as close collaboration between all parties involved. The WNY experience showed that a useful disease registry can be established in a community largely consisting of numerous disparate primary care practices. This laid the groundwork for the future use of EHR data for a variety of purposes in the community. The methods used and lessons learned through this endeavor may benefit other communities in a similar position, with several disconnected EHRs, to establish unified registries.