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Online Research Tool for the National Institutes of Health

  • Online Research Tool for the National Institutes of Health
    Converted a paper-based research questionnaire into an online system for NIH researchers
  • Online Research Tool for the National Institutes of Health
    Users login and learn about disease indications, recommendations and screening options
  • Online Research Tool for the National Institutes of Health
    Our solution included administrative controls and reporting/tracking options for researchers
  • Online Research Tool for the National Institutes of Health
    Easily edit content and information within the content management system
  • Online Research Tool for the National Institutes of Health
    In 2014, Phase 2 will include new features, enhanced usability and options for end users as well as additional functions for researchers


The National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) wanted to translate a paper-based assessment on family health history and risk of multiple diseases to an online, interactive health and risk assessment tool. At the heart of this work was a research study built around an online family health history site that tracked and captured all aspects of participant’s engagement with the assessment tool.

This online tool needed to be user friendly, allowing study participants to easily enter their own health history as well as the history of their first- and second-degree relations. The site needed to be easy-to-use and engaging to retain interest long enough to complete these necessary data capture activities.

The site also required a database to capture and track participant’s responses. Based on algorithms for risk assessment, the site dynamically produces each user’s expected risk of contracting certain diseases; recommendations for a healthy life style given their risk data; and pertinent information on the at-risk diseases.

Lastly, the site needed to provide the NHGRI researchers with the administrative tools and data they required to gather meaningful results from their research. NIH researchers extrapolated site data that was then analyzed and used to structure and test specific hypotheses. Given the nature of the site, security protocols and incorporation of relevant security controls as defined by the National Institute of Standards and Technology to protect participant’s privacy rights was also critical.


This was a two-phased project with the first phase focused on building the site based on the paper-based study tool.

Information Experts began work with an analysis to understand what the researcher requirements were – to answer questions like how were they going to use the captured data? What experiences did they want their participants to have? And what security controls needed to be considered?

We captured and documented requirements thoroughly and then moved to architecting the solution. Our strong human factors experience helped us create wireframes and workflows and designs for the new site and accompanying database so the researchers had a clear understanding of what their study tool would do when built and so that the site was built with the user and research needs clearly in mind.

Using a web application development framework (Ruby on Rails), we built a dynamic site that met the researchers’ needs in the first project phase and that was able to grow and expand with the second project phase. While the first project phase resulted in a site that closely mimicked the paper-based tool, the second phase empowered researchers by providing them with greater flexibility such as the ability to poll and better track participants as well as the ability for A/B testing. As with the first site, security controls and requirements were a consideration and were worked into the site architecture from the beginning. From the participant perspective, the second project site provided additional family health data including an expanded family tree that provided a visual representation of health profiles of all invited family members.

Services Provided

  • Human Factors Engineering/UX
  • Creative and Design Development
  • Website and Database Development