The Insanity of Health Records, AKA Our Healthcare Information Network (or lack thereof)

From FB entry September 16, 2015

"Just spent the last 2 hours trying to secure authorization for release of medical records from CA. For my mom only. Thanks to the efficient people at City of Hope, I was able to email 2 signed forms just minutes ago. But OH.MY.GOD. I have lost count of the number of times I had to explain why I was calling, because I was transferred again. And again. And again. And this was after I had to listen to the automated voice message from UCLA telling me to download their form from their website for the second time, just so I could get the website down. That doesn't even begin to cover the conversation I had with the records person at the new provider's office, because after talking with Mom she says," I could barely understand what she was saying. Now these are the records I need from you." After which she rattles off a list longer than my arm of all the images, doctors' notes, pathology reports, etc etc. Once again, I'm left wondering how an senior citizen whose first language is not briskly spoken English is supposed to navigate this on their own. It's a good thing I had that espresso after lunch!"

This is only a sliver of the part of our journey that involves getting records released from my parents' previous doctors in CA to their new doctors here. As a younger person without a pre-existing condition, I will assume my healthy state is the only reason I was able to move here, pick out new doctors, and set up new appointments without once having to go through the process of getting any records from old doctors in CA. I did manage to get copies of The Gift and Elfgirl's vaccination records before we moved, but as it turned out Elfgirl's ped's office didn't keep very good records, so she ended up getting vaxed twice "just in case." 

When a person with a number of health conditions moves to another state, they will out of necessity start over with all new doctors. New PCP, and any number of specialists. Just securing records from Mom and Dad's old PCP was a challenge. We made that the priority so that both of my parents could get set up with an intake appointment as soon as possible. My mom included a list of all the previous specialists and their phone numbers. What we didn't know was that the new PCP couldn't contact the specialists to secure records because you need a separate release form for each one. Almost none of the doctors (with the exception of the eye practice) would set up an initial appointment until records had been received. Getting records from Dad's retinal specialist was so excruciating I will spare you the details, but it finally got done when the admin assistant at the new practice took pity on us and called the office herself, 

There are two aspects of this process that make it painfully complicated and long. 1) There is no universal database of patient information. Every practice in the country doesn't even necessarily have a database. Even if two given practices do, their databases don't talk to each other unless they are in the same network or medical group. So even though the act of authorization can be electronically given (sort of), records have to be faxed or mailed. 2) HIPAA is extraordinarily effective. In fact it is so effective that the patient herself has no easier way of authorizing record release other than navigating whatever phone or web maze a practice has set up in order secure the right forms, fill out and sign, and return. 

At the time of this writing I have to get Mom to open her email because 2 weeks ago her "new" endocrinologist's office emailed her a new record release form. Mom didn't know this because she is still not in the habit of checking her email every day. Apparently when we filled out a record release form last month we did it incompletely and incorrectly. I remember that form and and the time I *thought* the questions seemed straightforward enough. Now as it turns out, I need a remedial course in form deciphering. How, I wonder, do senior citizens manage to do this, esp. if English is not their first language, or they have cognitive issues, or they don't have an advocate? Why does this have to be so complicated? It's a good thing we are not urgently trying to see the endocrinologist. Based on what another doctor's office told us, if we had an immediately health issue, they would make an appointment right away without any questions, but because this is simply "continuing care," we have to go through the maze.