Patient 101 - A quick guide to improve healthcare interactions

In Your Corner

We’ve discussed before how I get insurance approvals, you can see my original post here. In some more discussions online, I realized that perhaps there was more to the conversation and that perhaps I need to expand what that process looks like, a process document so to speak. How can we, as patients, work to get the care we need? Acknowledging their competing priorities and vanishing time, how do we perform the functions our physicians and other clinicians can’t/won’t?

There are always things we need access to for our care. Whether it’s the correct infusion setting, the appropriate medications, or more straightforward things like, oh I don’t know, a functional pump. Who should be teaching us these things? It is up to us to figure out how we learn to get those things for ourselves.

Right now, we’re all learning through shared terrible experiences. What if there is a way we can help one another through such issues and self-advocacy without having to weather terrible experiences? I am constantly frustrated by some of the repeated experiences that I see being shared. The next question became, “well, what can I do about it?” That’s what this is attempting to start – collecting the best ideas in one place. We’re going to solve this together – one step at a time! 

So in the interest of getting the ball rolling, I’m going to share some tips I have with you.

One, get a notebook where you write everything. One single notebook for your appointments, calls with insurance, and discussions with your specialty pharmacy. This makes sure everything is in ONE place - and you’re not searching saying “Which notebook is that in? Where did I write that down?” Keep that notebook in an obvious place. Ladies, carry it in your purse. Gentlemen, consider carrying a purse… :-) I know Colin uses the notes app on his iPhone and IPad. Physical or digital, be sure that someone, ideally your emergency contact, has access to your device and knows how/where to look for information.

Two, write everything down. Sometimes, those “throw away” details become critically important. Who at the doctor’s office gave you that information? Who at the specialty pharmacy is handling your orders? What IS that insurance authorization number, or the dates it will run? These are all important details for you to have access to, but also gives someone else a place to start should, God forbid, something happens to you. It will show clearly the disease process, the things you’ve tried, and your care plan with your doctor.

Three, speak with confidence. Be polite but firm. Don’t let anyone bully you into accepting the unacceptable. Ask directly for what you need. Do not hang up the phone until you 1) understand what you’ve written down 2) have a good idea of what your next steps are. Do your best to create a mutual understanding of what is going to happen. What does THAT mean? Well, when you think you’ve come to a mutual agreement, write out what you think you’ve agreed to and read that back to the representative on the phone, i.e., “So what I understand is that I will be receiving a new pump and a new pole with my next IVIG order. That IVIG is authorized by the insurance and currently scheduled for the 30th of October. Is that all correct, Sally Sue?” If Sally doesn’t agree or has additional detail, she will provide it here.

Four, keep trying. I know this one seems obvious, but sometimes, you will fail to get what you need or to advocate appropriately. If you are not sure what the right ask is? Write it down in your notebook, or email me to help iron out the ask ( You’ll lose your cool (Who doesn’t with the terrible crap that these companies try to pull?) and that’s ok, too. Tomorrow is a new day and YOU CAN DO THIS! Also remember, sometimes it can be as easy as calling back and speaking to someone else.

At the end of the day, you’re the best advocate you’ve got. Part of our mission at Immune Competence is to help you amplify your voice to be the best advocate you can be. We’re here for you. Please reach out and tell us how we can best help you. What are some other key things you’ve done to get what you need? Let us know!