I made a tiktok that got a little bit of traction about how a tool I created for going to the vet, has helped shape my doctors appointments... and I realized I should create a higher contrast version and share it everywhere.
I stutter, and its not something I talk about, but it is something that has ebbed and flowed for me. There are periods of time when I don't and most people who have spoken to me face-to-face would never know. There are other times when verbal communication is really challenging and I will switch to pen/paper, text or chat, or a few words in ASL. High-stress environments with a time-crunch really ramp of the likelihood that stuttering will just be part of what happens.
Recently, I had to bring a sick cat to a new vet and created a one-pager to help me manage the appointment. It had all of the major things I needed to convey so if/when I started to stutter, I could point to the exact word or piece of info on the sheet. I was surprised at how both the tech and vet responded.
They were thrilled. One even said "I wish everyone did this!"
There was no condescension or pandering, it was just a good disability tool that helped more than just me. And that is the thing we know - the Curb-cut Effect - where something that is created for disabled people, helps more currently non-disabled folks. (Curb-cuts designed for wheel chair access improve access for strollers, people using carts, children, and folks with different mobility aids - the impact is bigger and more inclusive than the original design.)
The structure is kinda of like a meeting agenda + a rubric smooshed. Why am I here + what is wrong + what I am specifically asking help for + the other stuff going on that other doctors are concerned about. Its a way of keeping everyone on task, while acknowledging that your care provider might have another piece of the puzzle you don't and you want their expertise... but they can only share that if they have the data.
Here is a high-contrast image:
I admit that if you have chronic illness, this is unlikely to be able to be a true "one pager", but it is a framework that I hope helps others and making their own version. Medical appointments can and are so stressful for so many reasons. There is such a short amount of time to relay so much information and the fear of forgetting something is really a challenge. To be fair, I don't know anyone with long-term health issues that hasn't experienced little-t or big-T trauma from the healthcare system and/or a provider. These are not neutral situations, there is an inherent power imbalance and there are so many obstacles to being listened to, believed, and getting care - especially if you are not neurotypical, not able bodied, not white, not cis, not amab, English isn't your first language, not thin, not a citizen, and not wealthy.
This isn't gonna fix that. We need universal healthcare, trauma-informed care, new systems for understanding pain and bodies, ways of communicating information so people understand their body and options, and a better way for care providers to admit how little science/medicine actually know/understand... AND that they are still going to try to help. We need true care coordinators. We need health-care rather than the sick-care model we have. Harm prevention models show over and over again how metrics of health improve when people have access to stable housing, fresh foods and vegetables, stable income - these things actually take pressure off ERs and improve our neighbors' lives.
At the same time, I need to get through a bunch of healthcare appointments with smart people who aren't yet skilled in how to always pivot communication methods. I am testing this method out for a few months to see if it helps me navigate care and solve the problem of not every provider being on Epic/MyChart.
Short Overview
-1-3 sentences or "elevator pitch" aka why are you in the room here today
Concerns/Questions
-if you can only ask a few questions or highlight a few concerns what are they
-make sure the most important are first
Symptom Changes
-new symptoms
-worse
-same
-better
Add photos if needed
Rx and Supplements
-changes
-new reactions or allergies
-same meds (meds that haven't changed since they last saw you)
Other Test Results
-date, test, ab/normal
Upcoming dr/tests
-date, name, specialty, who ordered/referred
Other
-stuff that doesn't fit in any other place and is not critical
Again I think this is a starting point and mostly it has come from the realization that care providers cannot quickly view all current medications and prescribers, or see test results easily - especially if its from outside their facility - and the reality is, most providers do not have the time to review your chart before your appointment. It is awful and unfair, but it is the reality that we truly have to do that work if we don't want to loose 10 precious minutes of an appointment to them scrolling to try to find something on their computer.
If you read this far, thanks and I am sorry you are in this boat. I also hope that its super clear that I don't believe in using AI for asking medical questions or managing care, especially for chronic health. It is often inaccurate and also unsafe. I am not a doctor or a healthcare provider and I am not YOUR doctor or healthcare provider. You need to ask people who not only know about a topic, understand the specific critical thinking needed for a very specialized topic. It is important for you to know the source of your information - and it is ok to ask your doctor for more information on where they received the info. Ask for studies on efficacy, side effects, risks for a medication they are recommending. Doctors are scientists and they love sharing information! Part of their job is to make sure you understand what is happening and why they are recommending a test, procedure, lifestyle change, or medication. AI can't and doesn't hold the nuance of what a specific person need and it doesn't have the critical thinking to read the footnotes and know if some piece of information is wrong or invalid.
