This actually has happened to me, and it is infuriating! Although, it’s kind of odd that it’s happening with gastroenterologists because it’s not that strange to ask for a second opinion (or more). I’ve seen 4 GI doctors across 3 different medical systems, so 2 have been in the same clinic (but my regular GI doctor referred me), and I actually have another appointment with a new GI doctor in the same clinic.

Anyway…not to bore you with those details. I was turned away when I was seeking a GI psychologist (they offer gut directed hypnotherapy or cognitive behavioral therapy for functional GI conditions), and it’s very hard to find a provider. I maxed out the allowed sessions during the height of the pandemic lockdown and we were stuck doing phone sessions and therefore couldn’t do hypnotherapy. They discharged me anyway. With the support of my GI doctor, we looked for someone new.

Exactly like you said, no less than THREE GI psychologists at various academic medical centers used Epic (the medical records software most medical centers use) to access my records and canceled my appointments because I had been seen elsewhere. I was livid. They wouldn’t even listen to what happened (hello, COVID) or even talk to my doctor.

Here is what I did: I enlisted my PCP to help me reach out to the next person I wanted to see. AND: I turned off Epic’s Care Everywhere feature. That effectively shut down the ability of providers in various medical centers from accessing my records without me either reactivating Care Everywhere or handing over clinical notes directly (the old fashioned way). That gave me back the control to share what I wanted, when I wanted.

Some providers I can tell are kind of irked or annoyed because they can’t see everything and it is sort of annoying that I have to report my medications over and over again, but I don’t really care. I have multiple, complex, intertwined health conditions and providers can easily judge me based on my records. There are also very clear errors in the records that I haven’t been able to have corrected despite trying. I prefer to be the one to tell my story when seeking a second opinion or other care. It could be an issue in an emergency but it’s not hard for me to turn it back on and I don’t have any conditions or serious allergies that would put me in significant jeopardy if emergency action would need to be taken.

I’m not sure if the clinics you’re using use Epic, but it’s highly likely because they’ve cornered the market on medical records. If that’s the case, in a large medical center, there should be a HIPPA person or office you can contact and request to turn off Care Everywhere. Or, do you have a primary care or other provider you could ask to help you communicate with another GI doctor?