Patient Centered Care is:

The RIGHT to know if a principle investigator selected me to unknowingly participate in a study while sharing my Dr's appointments, health issues & treatment outcomes via the EMR to capture my data & study my experiences/outcomes w/o my knowledge

Patient Centered Care is:

having the ability to know if my medical information is being shared for the purposes of a study & knowing if my treatment options are being effected by a principle investigator determining what my treatment will be so they can get the data they want

Patient Centered Care is:

Having the ability to "JUST SAY NO" to sharing my PDMP data, my family's medical history, my medical history, medical records & PDMP data with an unknown principle investigator...who wants data for a study

Patient Centered Care is:

Being able to "JUST SAY NO" to being forced into giving up my medication while simultaneously being forced to perform unproven treatments such as mindfulness & tai chi so principle investigators can study my outcomes while calling it "best practices"

Patient Centered Care is:

Not needing to justify (to anyone) my right for wanting to have a private relationship w/my Dr that doesn't involve academic institutions, grant money, overzealous pharmacists & insurance company employees who have no medical degree yet dictate my care

Patient Centered Care is:

Care that is based on MY NEEDS, not the needs of the population or whatever study is happening in my area. I'm sorry there are ppl who struggle with respecting the medication I use to treat my painful disease. I need this medication to function/live

Patient Centered Care is:

Being aware that these activities are occurring and having the ability to say "NO; I want my doctors visit to be about me, what is best for me, what will help me have the best chance of leading my best life while using treatments I approve of; prefer"

Patient Centered Care is:

Not shrouding the unknown in phrases like "best practices" when it's unknown if these practices are what's "best". It is not gaslighting me & telling me I am not trying hard enough & calling me a drug seeker if I want a pain Rx instead of mindfulness

This is what I call "Patient Centered Care"

and important to note:
most people would be happy to help these pain studies but the problem was no one asked. Our treatment was changed & we were studied WITHOUT OUR CONSENT. That is not how this is supposed to work. Ask next time

What is Patient Centered Care to you?

Here is the NIH Pathways to Prevention meeting. It is all here. We want to see our doctors, we aren't seeking medical care so that we can be studied.

#EndTheExperiment