"I Need To Talk To You About Asthma" - Patients as Experts
“Also,” came the next text in the series, “I need to talk to you about asthma."
The conversation went on a sharp u-turn from scheduling a meet-up with one of my respite clients, to asthma. An area that I am apparently an unintentional expert in, to both my pleasure—being able to offer people information—and my dismay. Being able to offer people information means a) I have experience in way too much medical nonsense, such as asthma, and b) Someone else is dealing with that same, or similar, medical nonsense. And that sucks.
It also sucks that they are at some completely random point on a non-linear path (maze) that is this medical system, and asthma itself.
Patients as Experts
Recently at Stanford Medicine X, my friend Ryan and I were in a group brainstorming exercise, along with two other people at the table whom we had not met. One disappeared from our group halfway through, but The Man Across The Table, who stayed had never done such a brainstorming exercise, which was of the How Might We and write on all the Post-Its format, also known as of the IDEO variety. As Ryan and I were slamming down Post-Its about giving patients free pizza in efforts towards soliciting feedback for healthcare improvement (Seriously. We both wrote free pizza, and slammed them down on the sheet of paper in front of us within seconds of each other), he was calmly writing, you know, practical things on his Post-Its. Once we stopped to discuss our ideating results, and after I noted I’d been at IDEO two days before for a day challenge centered on this very process, the man laughed, looked at the volume of Post-Its Ryan and I produced, and said “You’re the experts”.
I never did catch what brought the Man Across The Table to Medicine X. I don’t know if he was an undercover patient (ie. not part of the ePatient group), but I predict not. I predict he was of the healthcare provider, hospital administrator, or other stakeholder variety. And for any of those parties to note that we, as patients, were the experts, is exactly the thinking that happens at Medicine X—and less often in the rest of the healthcare world.
Expert Opinions: In The Regular World
The regular world has, for the last few decades at least, been in a state of flux. More and more, people are challenging doctor knows best, and not just in some homeopathic, alternative medicine sort of way that I don’t personally believe much in beyond things like exercise actually based in science, but in that we don’t just seek out our friends for emotional support, but often, for direct lived experience. I have advised many parents about next steps to consider asking their child’s doctor about, and many adults of the same things to investigate for themselves. Whether they come to me about asthma or it just comes up in conversation, in the regular world, patients and caregivers are networking for better solutions, because patients can be experts.
Drawing a Line: Knowing What to Do With This Information
It’s important to note that not all patients are patient experts. It’s a process that happens somewhat by choice (I say somewhat because it’s highly personality driven, I think). Some people learn the minimum they have to (or don’t), accept the doctor’s advice (or don’t), and don’t invest themselves in the nuances of their disease/disease process/treatment options. This is totally normal, and why “patient experts” or engaged patients (ePatients), may be a different breed of patient entirely.
In order to actually accept information from a fellow patient, consider these things:
- Where does this patient get their information from? Is it science-backed and reputable? Can they provide you more resources?
- Do they put firm emphasis on asking your doctor about options x, y and z, outline various possibilities or options, and seem to have a good reason for their suggestions?
- Do they emphasize that they can speak from their experience only, and that your situation may vary?
In ALL CASES, verify any information you receive: if this is related to treatment, never change anything without speaking with your doctor, even if it is a small-seeming dosing tweak. In regard to treatment and theory about your health condition, make sure you can back up information with multiple reputable sources (ie. high quality websites, scientific journals, healthcare professionals). And remember that personal experience is key: something that works for them may not work for you.
I always phrase responses the same way: I ask educated questions (What medication are you/they taking? What type of doctor are you/they seeing? Have you/they had x, y or z tests done?). I preface everything with “In my experience…” “When that happened to me I…” and “You could consider asking your/their doctor about…”. And I always try to emphasize the ridiculous variability of this disease that is asthma, and that I am clearly not a medical professional, and they need to consult someone who actually is.
Usually, this process helps to guide the person or family to what they need to do at their next medical appointment to move their care forward. It is very different from giving medical advice in that I am simply asking questions and giving suggestions for further action based on their responses. Perhaps you should ask your doctor about allergy testing. "Maybe you need to try a different medication, I’d ask your doctor about that." "I’ve had x experience on y medication, but z medication worked great for me—you may not have that same response, but it is worth trying if you’re not happy with how things are” "Let me know if you want any resources about [topic].”
Patient experts are very different than medical professionals—but we do offer a lot of insight that healthcare professionals may not have in both navigating ups-and-downs of a disease like asthma up close and personal, and navigating a health system with that disease (which may vary based on geography). And I’m happy to be an expert in that regard if it makes their life a bit easier, especially near the beginning of the maze that is asthma.
How do you respond when people ask for advice about asthma?
Do you get muscle cramps caused by your asthma medicine?