A system that allows individuals to self-manage extremely complex conditions and, with appropriate consent, share ground-breaking research data with a national registry.
The Immune Deficiency Foundation (IDF), founded in 1980, is the national nonprofit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases (PI) through advocacy, education and research. There are approximately 250,000 people who are diagnosed with a PI in the U.S. These individuals often find it difficult to receive specialized healthcare, proper diagnosis and treatment. Individuals affected by PI also experience difficulties financing their healthcare, finding educational materials on the disease and locating others with whom to share their experiences. IDF helps these individuals overcome these difficulties and live a healthy and productive life. The constant presence of IDF assures patients, their families and their medical caretakers that there is a place to turn for help.
After being awarded a grant by the Patient-Centered Outcomes Research Institute (PCORI), IDF looked to Get Real Health to create a more user-friendly web interface and mobile app to give its PI community a more robust ePHR that allows patients to manage their health and patient data more easily than ever before. This enhanced patient portal was also designed to allow consenting patients to share their health data in order to participate in research through the Patient Powered Research Network called PI Connect.
Get Real Health was tasked with completely transforming IDF’s electronic personal health record, to provide a more user-friendly patient portal for its community that would allow members to easily enter information anytime, anywhere from a computer, tablet or smartphone. Get Real Health customized widgets, including two infusion logs, a health and life journal and detailed infection and symptoms widgets, for IDF patients. The enhancement offered users access to the entire HealthVault ecosystem immediately, as well as integration with Blue Button+ for direct, secure messaging capability coming in a future enhancement. All patient data for this solution was stored in Get Real Health’s CHBase platform.
By utilizing InstantPHR customized widgets, IDF and its patients could manage their health in one easy format, and—with consent—allow that same data to be shared with a national registry to aid in research for generations to come.
This project was a first for Get Real Health, as the two-pronged benefit of the solution was unique in deployments to date. Working with a disease community to better manage patient health and increase patient engagement is our base but adding a research component to the portal was yet another example of InstantPHR’s nimble qualities.
“Because the symptoms of these diseases and their management vary so widely, we are excited about our new ePHR being developed by Get Real Health.”
– Marcia Boyle, President and Founder of IDF