What would improve the healthcare experience for me, as a patient with multiple health conditions? I’m glad you asked. (You did actually ask, right?) A few things would help move things forward. Here’s a thought-purging because I happened to have coffee:
Billing processes that make sense. For example, I received a refund for mail order pharmacy overpayment in the same week I received a collection notice for the same account. I had overpaid because their receivables system wasn’t as fast as their billing system, which flagged my account for collections when in fact I was ahead of the game. If the billing system was synced properly with the accounts receivable system, they would have known I was in the black, not in the red. But thanks for sending all those letters telling me I wouldn’t receive any more insulin shipments unless I paid the (not due) balance. Fuckers. (Also, get paid for things that make sense. A test to diagnose me with type 1 diabetes twenty-nine years after my type 1 diabetes diagnosis is ridiculous, but required by my insurance company. What a waste of resources. Spoiler alert: I have type 1 diabetes.)
Everyone be on time. Simple, right? If my appointment is at 10 am, I show up no later than 9.45 am, usually 9.30 am. I’m afraid of being late. But the HCP showing up at 10:15, 10:30 … 11 am is fine because their schedule takes precedence over mine? I understand being late from time to time, but a 10 am appointment should not linger well into lunch time. I like lunch too much to miss it.
Make getting paid easier. My doctors should be paid for what they do. If they review my CGM data, there should be a billing code that pays them for that review. If they (by the grace of some fancy god) are able to email me, they should be paid for sending that email. Their medical expertise is hard-earned and should be properly appreciated. To that same end, my insurance company should pay out (incentivize!) proactive care instead of reacting to chaos. My parents should not have had to battle for more than three test strips per day for me when I was a kid. Checking my blood sugar should be fully covered, as it’s an investment in keeping me healthy. Pay to keep my body whole, don’t start paying once it starts falling apart.
Don’t let money drive. Twice in the last three months, I’ve had to make appointments with new care providers and the very, very first question out of the receptionist’s mouth is, “What insurance do you have?” This is immediately after, “Hello?” I would guess that this is in effort to streamline the phone tree (and triage) process, but you don’t even know why I’m calling. And you have no idea what I can and cannot pay for. Asking if you’ll be paid before asking if I’m okay puts financial needs in the driver’s seat … yet another driver, with the patient tied up in the trunk.
Treat me where I am. If I come into my GP’s office with an issue that applies to their primary care practice but they consider it a diabetes-related issue and they refer me back to my endo in order to receive care, that’s crap. Treat the patient where they are. Ask about and then make the mental health referral in my endo’s office, please. Don’t turn me away if I come to my PCP with a diabetes need. Sometimes it’s difficult to get time off to go to the appointment, and having the issue not even addressed because it’s deemed out of scope makes it that much harder for me, as a patient, to coordinate care.
Integrate the shit out of things. My A1C should be sent by my endo to my primary care doctor’s office. My pregnancy file should be sent from the high risk maternal fetal medicine office that delivered Birdy to my “regular” OB/GYN here in Rhode Island. (Why am I still tracking that information down, almost six years later?) My dental records should be on file at my PCP’s office. Any visit with a mental health professional should be documented and sent to my PCP and my endo. I’m not asking my medical teams to start a softball team, but it would be good if my information flowed in a predictable and useful way. Instead, I have this weird folding file of information and lab work and notes in my phone, creating a patchwork quilt of my medical information that’s a little threadbare. It would be great if EMRs (or EHRs or EMFs) actually worked for me, and for my medical team. Otherwise, they become another tool that keeps my medical team from making eye contact with me and I’m still dragging around that folding file.
Life with chronic illness has taught me that the medical system is gross and broken. This isn’t a hard and fast fact (see also: you are reading this on the Internet, therefore consume with grains of metaphorical salt) but anecdotal experiences eventually harden into truth.
And that truth is my life with diabetes.