Abstract
Background: Family health history (FH) is an underutilized tool in healthcare and could play a central role in enhancing the use of preventive services for a variety of disorders of major public health importance. Existing clinical prevention guidelines for screening and management of disorders incorporate FH information. Unfortunately, obtaining a FH is time-consuming and many primary care providers are insufficiently trained to effectively interpret the information they obtain. Studies show that clinicians often neglect FH in the context of healthcare visits. A potential solution would be the development and widespread adoption of interoperable health information technology (HIT) systems that facilitate patient entry of FH information and provide automated clinical decision support for clinicians.
Methods: The American Health Information Community (AHIC) is a federal advisory body organized to make recommendations to the Secretary of the US Department of Health and Human Services on how to accelerate the adoption of HIT. In July 2007, AHIC advanced recommendations to improve electronic health information exchange via the implementation of standards for FH information. The first step to developing interoperable HIT systems for the collection, interpretation, and exchange of FH information is the development of a widely accepted core minimum dataset for FH. To this end, the Personalized Healthcare Workgroup of the AHIC assembled the FH Multi-Stakeholder Workgroup to develop a minimum core dataset. The workgroup is comprised of over 40 members representing approximately 18 different public and private organizations with expertise in the area of FH, HIT, and healthcare delivery.
Results: The FH core dataset for primary care was developed using an interactive, iterative process that used the proposed standards for FH information contained in the Continuity of Care Record (CCR) as a foundational document. Some key features of the core dataset are, FH information should be collected in a structured manner that permits the generation of a pedigree, age of disease onset should be collected, and self-identified race and ethnicity data should be included as FH information. The document outlining the requirements will be made available for public comment in early 2008.
Conclusions: The document should serve as a solid foundation for public and private efforts to create HIT systems and demonstration projects examining the utility of interoperable FH information in clinical and research settings.
- Received September 11, 2008.
