Medical Records, Digital Technology, and Empowering Patients

One of the interesting side effects of living with a first-year university student in what is essentially pre-med, is that occasionally I get asked input on issues related to the medical system. One such topic that came up was digital technology in medicine and it’s impacts on patient health and care.

Hey, wait, I’ve got something for this.

Immediately my mind went to the MyChart system that the Ottawa Hospital used back when I lived there.

The MyChart system is basically an online portal that allows patients who register for it to access their chart online. It’s not complete, but it contains notes on any tests run in the hospital network. The part that was most useful for me however, was the fact that it let me access up-to-date blood test results when I was in the hospital.

One of the realities of being a neurodivergent woman with a chronic illness, is that I have to navigate a prejudiced medical system. It’s not uncommon for certain symptoms to be taken less seriously when they present in women, a part of the medical systems pathologizing of either having a uterus or being a woman. These symptoms can include among them, abdominal pain and iron deficiency, two major aspects of Crohn’s Disease.

In addition, frequent hospitalizations that result in being given pain medication means there is always a risk of being mistakenly perceived as a drug seeker.

All these things put together make hospital visits not only very stressful but inconsistent with regards to quality of care and treatment. The worry of course is for something serious like a blockage, fistula, or abscess being missed because the doctor assumes you have a low pain tolerance or thinks you’re trying to score. Not to mention being in severe pain is both unpleasant and also not good for your health. Continue reading “Medical Records, Digital Technology, and Empowering Patients”

Medical Records, Digital Technology, and Empowering Patients
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The Facebook page for Splain You a Thing was taken down and I don’t know why

 

The saga seems to begin with a post written by Sunflower punk, after her child was harassed by men while walking home frm school. Her child is nine years old, and yet was deemed an appropriate target by adults. They scared her, and took away from her some of her freedom.

The post auto-posted on the page like all our posts, and there was no problem. We weren’t notified of any issue. People who shared the post, however, suddenly found themselves having the post removed from their walls.

Still, we were not notified on the page that there were any issues with the community standards. The only reason we even knew about the post having been removed elsewhere is because friends of ours let us know.

Then one morning, suddenly, the page was unpublished.

I went to the page, and saw a bar announcement over-top of the back-end of the page saying that the page had been unpublished for violating page terms and conditions. There was no explanation of what the specific violation was, nor did the actual terms page provided yield any insight. We had not even had a post removed from the wall, the page was just completely unpublished.

We suspected it was because of this previously mentioned post.

The pop-up offered the option of filing an appeal, so I clicked on it. I was offered no space in which to ask questions or offer any sort of rebuttal or anything. Only a button saying filed appeal. Click. Appeal filed. Still, no actual idea of what exactly we had done to violate the community standards.

Then one morning, both of us are logged out of Facebook and upon re-login there is a notice saying that this picture violated community standards.

A cartoon picture of Ania and Sunflower Punk holding spoons and a banner that says social justice garden. Sunflower punk is a Latinx person with sunflowers on their dress, and Ania is a white woman with an onion on her dress. The cartoon avatar is surrounded by words saying that this post violates their standards.

There was no specification of how it violated the standards, or what those standards were. The picture is one I made myself, I am the artist and so have complete license over the picture. The picture is directly related to the blog, it’s right there on the logo. The picture is not showing nudity, it’s not showing anything offensive, so what exactly was wrong with the picture.

This time, there is no option to appeal.

I go to try to find the page and it’s gone. I can’t even access the unpublished back end. There is no record of complaint, or appeal, nothing in any support inbox, no indication of what the bloody hell happened. Pictures we had on the page are gone. Comments, messages, reviews, and otherwise, gone. With no explanation as to why.

Since when is one post or picture enough to get a whole page unpublished? What about this picture violates standards? If I did violate standards because of some misunderstanding regarding the standards, or by accident, why am I not allowed to know how or what it was that did so, so that I can avoid triggering the same problem on future pages.

Why is my, and other writers for this blog’s, livelihood being threatened and why are we not allowed to know the reason? Why is there no record of any of this on our profiles? Why is there no notification or record of the decision on the appeal, or any record of the page even existing.

What exactly is going on?

The Facebook page for Splain You a Thing was taken down and I don’t know why