In my first days as a clinical health educator, I only knew the Health Insurance Portability and Accountability Act, or HIPAA, as the subject of lengthy, intense trainings largely focused on the risks of sharing patients’ information and the consequences for mishandling patient records. HIPAA represented an opaque bureaucratic labyrinth that I knew I just wanted to avoid.
That’s partly why the first time a patient asked me for her medical record, I froze. I asked my colleagues what to do, but most had more questions than answers: could we do that under HIPAA? Should we include the patient’s psychotherapy notes? How much time did we have to respond to her request?
If only we had known about the guidance from the Office for Civil Rights (OCR) – the part of the U.S. Department of Health and Human Services that is responsible for enforcing HIPAA – that explains individuals’ right under HIPAA to access their health information. The guidance was first published in 2016 and continues to be updated. Understanding individuals’ rights under HIPAA is especially important as we move closer to the day when consumers will be able to seamlessly compile and manage their health information using mobile health apps.
Here at GetMyHealthData, we were inspired to help even more people – including my former clinic colleagues – access and use OCR’s guidance, so we created an interactive version divided by content area. It even has quizzes to help readers process and retain the information as they go! We’ve also sprinkled in patient stories to complement OCR’s examples and keep the resource centered on the experiences of real people who need their health information, like the young woman who asked me for her records way back when.
In the end, that patient walked away with everything she needed, but the request shouldn’t have been so daunting for our team. I hope this resource will help other direct service providers understand how HIPAA supports sharing information with patients so we can all work to achieve better care and better health.