Author -Rupinder Colby
During an opening presentation at the 2013 HIE Stakeholder Summit Dr. Ken Kizer outlined plans to stand up a “Next Generation Disease Registry.” Kizer is Director of the UC Davis Institute for Population Health Management, the organization chosen by the state of California to develop and implement Health Information Exchange (HIE) programs across the state.
The registry project is part of an initiative called INSPIRE (Interoperability to Support Practice Improvement, Disease Registries and Care Coordination). Patients with high impact chronic conditions such as cancer, diabetes, Alzheimer’s and stroke often see providers in multiple care settings. No single provider has access to the patient’s longitudinal medical history. As is commonly known, integrating data from the multiple settings offers an opportunity to drastically improve care and reduce costs. This opportunity lies in near-real-time access and analysis of data allowing the derivation of clinical intelligence from the dataset to effectively manage chronic illness at the individual and population level.
During the Summit, Kizer reminded us that the current registry model utilizes manual extraction from charts. Because there is an underutilization of structured data collection at the point of care, extracted data must undergo cleansing, which in the case of cancer data can take up to 36 months. Two to three year old diagnosis information “undermines the usability and utility of the data, making it essentially of no use to clinical care” said Kizer.
Kizer’s Next Generation Registry envisions EHR-based capture of structured data directly from the point of care transferred through a HIE to populate the registry. The project will begin with providers in the ATHENA Breast Health Network. ATHENA, launched in 2009, gathers breast cancer screening, demographic, lifestyle and other information on women from five UC Medical Centers.
The registry project hopes to demonstrate the use of new HL-7/ASCO cancer specific data standards. The aim is to operationalize the breast cancer registry on an experiential basis as a pilot for implementation on a broader scale. The vision is to move to multiple sources of data and include multiple health conditions creating a single system for data collection and storage that can be leveraged at different ‘nodes’.
A second objective of the INSPIRE initiative is the concept of a ‘Health Information Home.’ This concept recognizes that data submitted to a HIE or a disease registry has clinical relevance. Why not leverage this registry bound data to make it available for population health management (PHM) analytics at the provider level. In place of a separate PHM system, Kizer envisions a ‘room’ within the Health Information Home that providers could access to support chronic illness care. This concept aims to vertically integrate data collection for HIE, disease registries, and PHM.
The challenge remains around the underuse of structured data collection at the point of care. Without structured data the cost and time required to accurately populate a disease registry remain inhibitive. Kizer noted this is a cultural challenge not a technical challenge.
The New Generation Registry and the Health Information Home remain evolving ideas—we look forward to hearing more.