Paper Tiger

Over the past few weeks we’ve detailed some of the more frustrating issues faced by our data retrieval team when following up on patient medical records requests. The goal of each story was to illuminate in detail just how aggravating it can be for someone in dire need of their health data to obtain the information to which they have a legal right under HIPAA. However, for today’s blog post about a patient’s right to request a digital copy of their record instead of paper printouts, we’re not going to beat around the bush. The cold, hard facts are more than enough to illustrate our irritation.

As Deven pointed out on Tuesday, HIPAA requires an institution to provide patients with their records in an electronic format if the data is available as such. In the rare instance that a hospital is still using 100% paper records and has for some reason shunned the last thirty years of computer database technology, the institution still must still provide the patient with a digital scan if they’re capable. One would assume that if a hospital is capable of performing a CT scan to create cross-sectional images of the bones, blood vessels, and soft tissues in the human body, it would be also capable of feeding a piece of paper into a piece of plastic. However, as the old adage goes: when you assume, you make an ass out of u and me.

Below are a few anecdotes that highlight the difficulties of this digital struggle, taken from our recent experiences here at Ciitizen:

  • One doctor’s office refused our request form twice, demanded the patient come in person to request the records (which, as we covered in a previous blog, is not allowed), and then proceeded to send paper records to the patient despite numerous interventions on our part to have them sent digitally, as the patient specifically requested.

  • In response to one patient’s request, a large institution on the West Coast sent us an enormous stack of paper, despite numerous phone calls with their privacy official and their security team about using their web portal to transfer the records digitally.

  • A children’s hospital in California required ten separate phone calls, including an additional four calls to the privacy officer and three weeks of non-stop emailing, before a stack of paper showed up in our mailbox, despite the fact the patient had clearly requested the records in an electronic format.

  • A renowned clinic forced us to escalate a patient’s request up the chain of command more than five times before we were eventually sent paper records instead of the digital data the patient requested.

  • We spent hours tracking down the privacy officer of a major East Coast health network, where the patient’s request specified that her digital health record be sent to us via email (with the required acceptance of any security risks). Two weeks later we received the patient’s paper records in our mailbox.

The raison d’etre of Ciitizen is to provide patients with a digital profile of their complete health history because medical records are far easier to search and share when they’re in a digital format. Rather than spend forty-five minutes digging through binders of paper printouts, an oncologist can quickly access the digital information he or she needs to plan treatment, and the patient can easily send that data out for second and third opinions. There’s no debate: information moves faster and is easier to manage when it’s in a digital format. Yet, despite HIPAA’s requirement that health institutions provide patients with at least a PDF or an electronic scan of paper records, we’re still getting giant paper envelopes on our doorstep (and often these giant paper envelopes are clearly digital printouts!).

Cancer patients — actually, all patients — deserve better.