Do you remember David, the boy in the bubble? Born with severe combined immunodeficiency (SCID), a primary immuneodeficiency disorder, or PIDD, that causes the immune system not to work, David — portrayed by John Travolta in a 1976 movie — might be the only reference most people have for this type of disease. But for Colin Seal and many other individuals living with them, the ability for the body to heal itself from certain types of infections is severely compromised.
Colin is leading a very productive life helping others who have this type of deficiency. A patient with PIDD himself, Colin became involved with the Immune Deficiency Foundation in Towson as a volunteer before he began working there. The Immune Deficiency Foundation was started in 1980 by Marcia Boyle, the mother of a son with a primary immunodeficiency disease, to help improve the quality of life for patients and their families. I recently spoke with Colin, a Program Manager at IDF, about a new project designed to help patients manage their health record information, and how it both supports IDF’s research about the disease and serves as a clear example of how tech and design can enhance people’s health.
Most PIDDs are genetic disorders. In the United States, more than 250,000 people are diagnosed with primary immune deficiency diseases. Thousands more go undetected. These diseases are chronic illnesses caused by hereditary or genetic defects in the immune system in which part of the body’s immune system is missing or does not function properly. Because of this increased vulnerability, patients are at great risk for prolonged infections and suffer from recurrent health issues.
With early diagnosis, medical advances and consistent monitoring of health, individuals are able to live full and “normal” lives. People with PIDD usually require regular immunoglobulin therapy infusions, many kinds of medications, close monitoring of reactions to medications and diligent maintaining of medical records. By conducting surveys about patient experience, the IDF team discovered a lot of patients were not keeping personal records of pertinent medical information. Seeing the opportunity to make this easier, IDF began an effort to make an electronic notebook. This eventually evolved into the IDF eHealthRecord, an online application that assists in documenting health records and data specifically for the primary immunodeficiency community.
The eHealthRecord helps patients to track diagnosis, infections and symptoms; scan and save important documents; and log doctor’s visits and medications, among other features. I was impressed with Colin’s enthusiasm for the project, and especially the attention to customer service that IDF provides to their eHealthRecord users. Anyone can get assistance via phone or email and get a personal response, along with a screen-share demonstration. CSL Behring, the sponsor of the IDF eHealth Record, even provided funding for a small in-house green screen, where Colin himself stars in “4 minutes or less” YouTube tutorials. Colin regularly attends meetings where he has the opportunity to talk to patients about how to use the program. Not to mention the private Facebook community where patients can reach out to others, ask questions and share stories.
From what I saw pulled up on Colin’s iPad, the module could use a little design love. Turns out they are already redesigning the user interface and overall user experience now and ironing out little quirks. Colin’s team sent out surveys to current users, and armed with information on exactly how the product is being used, can refine the interface to be approachable and intuitive for its users.
Where to go from here? Mobile, for a start. The IDF eHealthRecord is only web-based currently, with a mobile version in the pipeline. With the big push for “mobile first” in the web design community, this app may be an example of when developing the desktop version first made sense. Colin also emphasized how important the data pulled from this system (which is HIPAA-compliant and completely anonymous) will be to mapping the diseases and could possibly contribute to better integration with doctor’s offices.
A development such as the IDF eHealthRecord demonstrates the type of design thinking processes that should be at the core when designing for social change. Colin isn’t a designer, but he and the IDF team knew the right questions to ask and looked at the real needs of the primary immune deficiency community in order to develop a solution. And they chose to partner with developers (an outside firm) who didn’t just say yes to the project, but helped set the scope and made recommendations, applying their expertise. The nonprofit sector seldom affords the ability for mere experimentation, and empathetic designers who see the bigger picture produce better results.
Special thanks to Colin Seal.