This post is brought to you by the pain in my back during a fancypants gala event with my husband’s work. I’m laying on a church pew in the hallway while the party continues. I might as well write.
Last week I had an appointment with my endocrinologist. Usually I get bloodwork done one week prior so we can discuss the results, I bring a week of glucose readings written out to examine, and I carry a list of various other questions. This time, due to various life circumstances, I showed up almost empty handed. And that was fine because my endocrinologist is phenomenal.
She wrote me some prescriptions, completed the paperwork so I continue to receive government grant money (have I mentioned that I love the health care system here?), and said it was fine for me to go down to the lab after our appointment to get that blood work done.
I thanked her and said I’d call her secretary in a week to get the results.
And then she changed my world.
She told me that the Ottawa Hospital has started using a program called MyChart. Patients get an PIN from the hospital and enroll online. That sounded pretty good so I set it up before I left and logged in online a few days later.
I saw my most recent blood work (not great but okay) and then I scrolled down and realized I could see every piece of information that the hospital has written about me over the past year.
I saw the records of all my IVIG infusions and all my plasmapheresis treatments. I saw the results from every time they did blood work. I read assessments done by physiotherapists, respiratory therapists, neurologists, haematologists, immunotherapy doctors, anaesthetists, surgeons, and the pathology lab.
I read a minute by minute account of what happened during my thymectomy in January and as I was reading about all the manipulation my body went through while I was unconscious I though it was no wonder I was so sore when I woke up. They cranked my body into an optimal position for surgery using an inflated bag and various other props. There were multiple steps to removing my thymus and although I only had a few steri strips on my outer incision my insides were covered in stitches.
Picturing myself positioned like that, exposed, intubated, and with my eyes taped shut, I felt very vulnerable. I closed the website and went back to work.
Over the rest of the day I was haunted by that sense of exposure, invasion, and vulnerability. But that faded as I realized how grateful I was to have access to all that information. And then I felt empowered.
More empowered as a patient than ever before. This is a huge step that the hospital is taking. The former hierarchy of doctor patient relationships is being replaced by a more equal, lateral, relationship. By giving us access to our information in such a transparent way they are explicitly stating that we are partners in our own health care.
I love it!