Resources
Case Study: My Family Health Portrait
Client
U.S. Department of Health and Human Services (HHS) Office of the National Coordinator for Health Information Technology (ONC), Office of the Secretary of Health and Human Services, and the Office of the Surgeon General. Stakeholders include the Indian Health Service, National Human Genome Research Institute (NHGRI), Intermountain Health, the National Cancer Institute, Newton Wellesley Hospital, and the Agency for Healthcare Research and Quality (AHRQ).
Overview
The HHS had an existing web-based tool that allowed users to track their family history of diseases and conditions. They sought to expand the tool’s usefulness by employing standards so that the information collected by the tool could be used by electronic health systems; by increasing usability so that people could create their family histories with ease; and by developing the tool using open-source technologies so that it could be downloaded and installed by users throughout the world. They wanted the new version to incorporate all of the functionality of the existing tool, and to be created and deployed in a short time frame.
Problem
Health care professionals and the general public have widely accepted the importance of family health history for assessing risk for a number of common diseases. Despite this wide acceptance, there is a scarcity of personal health record (PHR) or electronic health record (EHR) systems capable of capturing family health history data in a structured, standardized, and interoperable format that can be integrated with electronic clinical decision support (CDS) or other computerized tools. HHS sought to provide a tool that would advance the standardized collection of family health information for the use of patients, individuals at high risk for genetic and common diseases, clinicians and, by extension, the PHR and EHR systems that they rely on. Working with a team of partners, 5AM joined the project as software developers, to create the web tool quickly and deploy it for use by the public.
Solution
5AM engaged with stakeholders and standards experts to quickly determine the best interoperability mechanism that the tool should employ, the HL7 Family History model. Working under a tight deadline, we created wireframes to engage diverse stakeholders in the system’s usability while developing the backbone of the system. Analysts and developers collaborated to meet the stakeholder’s requirements for the clinical information they wanted the tool to collect, balanced with the desire to have the system be easy and quick for users to complete, balanced with the constraints of the selected interoperability model. While developing the system, we supported partner organizations that will consume the machine-readable output of the tool into their clinical systems, and supported those seeking to deploy the tool within their own organizations, such as the Government of Mexico. The tool was also written to support internationalization – the initial deployment supports both English and Spanish versions.
Benefits
HHS was ready to move its tool into the 21st century, to provide to the public a web utility that would allow users to record, update, and exchange accurate family health history information in an easy and intuitive interface, resulting in a standardized, interoperable, machine-readable file format. The public is accustomed to completing a family health history form at doctors’ offices; moving the format to the Web, with a standards-based output, represents another step forward in electronic health information exchange. 5AM’s experience in interoperability and standards and our focus on the life sciences allowed us a fast understanding of the problem, risks, and opportunities the project could present to its sponsors, so that we could engage and be effective instantly; our Glassbox Software Development Process provided the ability for us to deliver quickly, and provided the large group of invested stakeholders to view progress as it occurred.