How do we help people retrieve their Protected Health Information (PHI) in an hassle-free and timely manner?
According to the Health Insurance Portability and Accountability Act (HIPAA), patients are guaranteed access to their healthcare records in physical and digital forms. While this law lays out a patient’s rights to receive and share their records, it also outlines the steps providers must take to protect patient information. These two mandates in HIPAA often stand in opposition to each other, and care providers over-enforce record protection to avoid government fines. This leaves patients struggling to access and share their healthcare records when they desperately need them.
But why do patients even need their records? Patients often need their records in pretty benign situations, like when they move to a new doctor and want to catch them up to speed. But patients also need their records to survive health crises – like stints in the hospital. Often hospitals won’t treat patients until their records arrive, leaving them to suffer for hours. And if patients are treated without doctors accessing their records, mistakes are much more likely.
Our team partnered with the U.S. Department of Health and Human Services (HHS) and the U.S. Digital Service (USDS) to create a tool that helped inform and provided actionable items for people seeking help accessing their healthcare records. Our interviews uncovered that many people don’t think about their records until they encounter a health concern. But at that point, they don’t understand their rights to access records and can’t translate the many websites full of legal jargon into any actionable steps to advocate for themselves.
We created a “HIPAA Troubleshooting Guide” that takes people through a series of background questions, concluding with a customized email template to send to their care provider. This template includes relevant language and legal backing to address their specific situation without patients having to do research themselves. This tool could be inserted on the HHS website as a precursor to officially filing a complaint to the federal government. We then created three additional prototypes that target patients in different ways to educate patients about their rights under HIPAA.
While we only focused on one small part of the HIPAA debate, we hope to create more empowered and active patients through our research and prototypes.