By Lisa A. Eramo
Disease registries come in all shapes and sizes, and their application is continuing to grow commensurate with population health management (PHM) programs. These registries, which collect health information about individuals from multiple sources, provide crucial data on which PHM programs rely. Registries help public health officials and others assess and monitor the health of a particular population and take proactive steps to keep people healthy. This data has been especially vital in the past year as the COVID-19 pandemic continues to impact the world.
Health information management (HIM) input is critical for the selection and development of registries. HIM professionals with training in health information technology (HIT) can provide input related to patient identity management, data integrity challenges, record localization, data population (i.e., manual entry vs. auto-population), real-time data feeding capabilities, local vs. external hosting, and integration of registries at the point of care.
What exactly is a disease registry? According to the National Committee on Vital and Health Statistics, a disease registry is “an organized system for the collection, storage, retrieval, analysis, and dissemination of information on individual persons who have either a particular disease, a condition (e.g., a risk factor) that predisposes to the occurrence of a health-related event, or prior exposure to substances (or circumstances) known or suspected to cause adverse health effects.”
Some examples of registries include the National Exposure Registry, immunization registries, insulin-dependent diabetes mellitus registries, and rare disease registries. A variety of entities may operate a registry, including the federal government, state government, universities, hospital groups, non-profit organizations, or private groups.
According to the Agency for Healthcare Research and Quality (AHRQ), the basic architecture of computerized disease registries includes the following three components:
- A database (server, database management system software, and management tools) in which providers can store patient information
- A data model to organize and integrate information in the registry
- Software tools that allow users to sort, manipulate, and create views and reports from the information stored in the registry
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Entities that wish to create a registry can obtain each of these three components individually to build their own solution, or they can purchase them as packages from vendors. Some electronic health record (EHR) vendors even provide registry functionality that helps providers measure and manage the financial risk of particular patient populations. These vendors go beyond traditional registry reporting to include predictive analytics as well as care management and coordination solutions that help providers make informed decisions at the point of care. All of this helps to improve the overall health of the population. These registries also contribute to the success of Accountable Care Organizations that require highly coordinated care for patients.
The AHRQ hopes to develop and implement computerized disease registries as a part of health information exchanges (HIEs). According to the AHRQ, “regional health information organizations and other groups that facilitate HIE often have the necessary administrative and technical infrastructure to implement a computerized disease registry. Their systems can usually allow for data extraction from multiple sources, transformation of the data into a common format, and loading of the data into the registry. In general, they also have the expertise to support interfacing from different providers’ health IT systems.”
As the prevalence of chronic conditions such as asthma and diabetes continues to grow, registries that can help manage patients proactively will continue to grow as well. The California HealthCare Foundation published a report titled Chronic Disease Registries: A Product Review that reviews several public-domain products as well as commercial registry software.
HIM professionals must seek opportunities to become involved in the development of disease registries. These registries will continue to drive the success of population health management.
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