Patients Managing Multiple Specialists - Care Coordination Stories
I've delivered three children. I get my annual flu shot. I've had my colonoscopy and my mammograms. I attend an annual primary care visit. I try to eat healthy. I have been an active runner for years.
On paper, I'm doing everything right.
Then, a running injury led to surgery at an independent clinic. Recovery didn't go as expected. Now, my care team includes my PCP, a sports medicine doctor, a neurologist, an orthopedic surgeon, and now a vascular surgeon, plus the local lab and independent PTs I've seen. Oh....and on top of what I manage with my leg, I am also experiencing symptoms of perimenopause!
I want to be careful here: this isn't cancer, a stroke, a rare disease, dementia, or a heart attack. I still have a lot of choice. I still can walk with minimal issues and do Pure Barre. I'm not writing this from a place of crisis, and I don't want to borrow the weight of what families facing those conditions carry everday!
None of my doctors nor my payor meet monthly to talk about my case. None of them know when my next appointment is. My insurer doesn't know what my doctors are trying to rule out, or that I'm paying privately for physical therapy recommended by one of my doctors. I am the one holding the whole picture together across five different systems that don't talk to each other.
I keep thinking about the fax machine, not because healthcare is behind on technology, but because it's a symbol of how a system can not anticipate the next step I, as the patient, will take, so I must carry certain information point to point with me.
The data problem is real, and brilliant people are working on it.
But even on the day that problem is fully solved, someone still has to sort through the information, read the results, understand what they mean for me, and decide what happens next.
And, most importantly, they've got to convince me, as the patient, to do my part to take care of the issue to keep my health on track.
So, here's what I want to know:
If you've been managing more than one specialist at once, who or what has held the full picture for you? Was it a person (a care manager, a spouse, a community paramedic )? A tool (a shared portal, a spreadsheet, your own notes app)? Or, honestly, no one... you were it?
I'm collecting stories about a piece on why I believe the clipboard and fax machines are harder to get rid of than we realize.
Before I write, I want to hear about your experience in the comments. I read every one.