State Synergies and Disease Surveillance: Creating an Electronic Health Data Communication Model for Cancer Reporting and Comparative Effectiveness Research in Kentucky

Purpose: This case study describes the collaboration between a state public health department, a major research university, and a health extension service funded as part of the Health Information Technology for Economic and Clinical Health (HITECH) Act to establish an interoperable health information system for disease surveillance through electronic reporting of systemic therapy data from numerous oncology practices in Kentucky. The experience of the Kentucky cancer surveillance system can help local and state entities achieve greater effectiveness in designing communication efforts to increase usage of electronic health records (EHRs) and health information exchanges (HIEs), help eligible clinicians meet these new standards in patient care, and conduct disease surveillance in a learning health system. Innovation: We document and assess the statewide efforts of early health information technology (HIT) adopters in Kentucky to facilitate the nation’s first electronic transmission of a clinical document architecture (CDA) from a physician office to a state cancer surveillance registry in November 2012. Successful transmission of the CDA not only represented a landmark for technology innovators, informaticists, and clinicians, but it also set in motion a new communication mechanism by which state and federal agencies can capture and trade vital cancer statistics in a way that is safe, secure, and timely. The corresponding impact this has on cancer surveillance and comparative effective research is immense. With guidance from the Centers for Disease Control and Prevention (CDC), the Kentucky Cancer Registry (KCR), the Kentucky Health Information Exchange (KHIE), and the Kentucky Regional Extension Center (KREC) have moved one step further in transforming the interoperable health environment for improved disease surveillance. Credibility: This case study describes the efforts of established and reputable agencies, including the KCR, the state department of health, state and federal governmental agencies, and a major research university in leveraging existing networks, infrastructure, and federally awarded funding to implement interoperable health information systems for disease surveillance. Project assessment through quasi-qualitative interviews with key stakeholders facilitated evaluation of attitudes and beliefs for continued use of the cancer surveillance model. Conclusion and Discussion: In Kentucky, the cancer reporting initiative leveraged and enhanced a solid foundation for statewide collaboration to achieve better health and improved disease surveillance through a learning health system. Leveraging the Meaningful Use (MU) program as an overarching policy and structural driver is imperative. The cancer reporting initiative in Kentucky suggests that future surveillance and reporting initiatives will require locally adaptable solutions and that there is a need for increased technical assistance in rural settings. Kentucky’s experience also indicates that stakeholders should be diligent in identifying state-level criteria that align with MU for vetting EHR vendors.