Most of us see a variety of health care providers for everything from routine primary care, to specialty treatment for chronic conditions, to lab tests and x-rays, to procedures for injuries. In the United States, it’s likely that each individual practice and facility will have their own system(s) for storing the health records associated with the portion of your care that they rendered. However, those databases often don’t communicate or share information with the other providers’ systems. U.S. law requires that each health care provider store your electronic health records securely, but it does not mandate that it all be centralized in any one place.
As a result, as we move through the healthcare system we often leave a trail of comprehensive, but very siloed information behind us.
A recent study estimated that a single hospital, on average, has 16 different electronic medical record vendors actively in use across all of its affiliated practices. This makes putting together a complete picture of one’s health history, or even current status, potentially a very daunting challenge. Your lab results, imaging tests, vaccination records, current medications, notes from that recent cardiologist visit, and even data from your fitness tracker device might all live in separate places.
Not only is this inconvenient and inefficient, but it can also be potentially dangerous. Imagine being treated at an emergency room and not remembering, or not being capable of communicating your blood type or known drug allergies. What if your gastroenterologist unknowingly prescribes a medication that has an adverse interaction with your blood pressure drug? Because these disparate providers don’t necessarily share or have access to all of your health records, the burden is on the patient to build and maintain a centralized repository of their data and self-report this information to all of their various providers.
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) gives individuals the right to request copies of their medical records from each of their providers. Health care entities are required to provide this information within a reasonable timeframe and for no or low cost. Unfortunately, most state laws don’t stipulate that patients actually own their data, and the process for requesting and obtaining it can be cumbersome - sometimes requiring a written request. But, the federal law is at least clear about the patient’s right to access the data.
Furthermore, HIPAA mandates that individuals can request their health information be delivered to them in digital format, which is helpful when approaching building a centralized, patient-controlled repository of one’s healthcare records.
Once you’ve got the data in hand, the question becomes how, and where to store it in a way that’s both secure, yet easily accessible for you and any family member or health care provider with whom you choose to share it.
In part two of this series, we’ll look at why it makes sense to carry your health information with you on your smartphone and discuss what to look for in an app to help make it easy and safe.