Possibly I’m in the minority here, and I’m aware the EDS Clinic seems to have a special interest in AI, but I find this very troubling, especially with at least two of the examples cited here: Assisting nurses with responding to patient messages and collating electronic health records.

It is true that patients with HSD/EDS, especially those who make it to the EDS Clinic (I’m one of them) have extensive medical records. But it’s also true there’s a high incidence (which is borne out in the research) of experiences with medical gaslighting and trauma, which I’m certain makes its way with all of those provider biases into my electronic medical record because I’ve seen it. My records have errors in them too; even my Mayo record lists me as having a completely incorrect rheumatological diagnosis that I don’t have. Despite my appeal to Medical Records which included documents from my local provider, our request to correct it was inexplicably denied.

I specifically shut off Epic’s Care Everywhere feature that shares medical records before I went to the EDS Clinic for this reason, and all because I wanted my provider to see and hear me, without formulating a pre-conceived notion and not what other providers said about me. I believe vast majority of the problems I had during my EDS Clinic experience had to do with providers relying on the chart and what others said about me, and not listening and hearing me.

My point is that it’s problematic until we can somehow resolve the flaws with how we train AI. As my sister, who is a biomedical engineer says, “People don’t realize with AI, there’s a huge risk of garbage in, garbage out.” It would be great if/when we can somehow address those things.

But it some thing for Google or Amazon to provide an AI summary of product reviews and a whole other matter of doing that with my health records in a professional setting. But then again, maybe it’s already happening and maybe that explains the sometimes nonsensical messages I’ve received from nurses in response to my questions…

I’m not anti-technology at all, but I worry that instead of holding ourselves accountable for improving our awareness of these conditions across the healthcare system and allocating the proper resources and staff to provide the care we deserve, we’re looking for a shortcut. I’ll never understand why for some reason it’s okay that medical providers don’t have to be knowledgeable about HSD/EDS and other chronic pain syndromes.