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5AM Solutions Electronic Health Information Exchange Tools

Collaborating with HHS, 5AM created a standards-driven web-based tool to provide a secure first step for patients to use an electronic health record

A recent survey found that 96 percent of Americans believe that knowing their family history is important. Yet the same survey found that only one-third of Americans have ever tried to gather and write down their family's health history.

Because family health history is such a powerful screening and risk assessment tool, the Office of the Surgeon General wanted to provide a web-based tool that would make it fun and easy for anyone to create a sophisticated portrait of their family's health. 5AM Solutions developed the software, “My Family Health Portrait,” available at https://familyportrait.hhs.gov.

The web-based "My Family Health Portrait," which runs on any computer connected to the Internet and running a web browser, helps users organize family history information and then print it out for presentation to the family doctor. In addition, the tool helps users save their family history information to their own computer, share family history information with other family members, and upload information to personal health records (PHRs), electronic health records (EHRs), and clinical decision and risk analysis tools.

The Surgeon General makes the tool freely available to all users. No user information is saved on any computer of the U.S. federal government.

The source code for the new tool is being made openly available to both non-commercial and commercial entities to install.

The Need

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.

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 software to incorporate all of the functionality of the existing tool, and to be created and deployed in a short time frame.

The 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.

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.

How We Do It

Our unique Glassbox™ Software Development Process minimizes the risk inherent in conventional custom software development, and ensures the final deliverable meets the exacting requirements of all users by:

• Integrating the voice of the end user into the process
• Enabling client visibility into all stages of the development process
• Providing production ready software at all stages

Software that Works

Our clients are 100% reference-able - you can contact them to find out first-hand how 5AM works. 100% of our software is live, being used by life science professionals on a daily basis.

Here’s what one of our clients says about us and our work…

“You are terrific at what you do; what you do is sorely needed; few are terrific at it.”

Thomas Miller Ph.D., M.B.A.
Program Director
NIH/NINDS