There's a great book that I read my kids from time to time called "The Whatif Monster" that i'd like to share some words from:
"Some Whatif Monsters like to hang out and fill up our heads with worry and doubt. They are sneaky and quiet and quick as a blink and the words that they whisper can change how we think. Jonathan James heard those words full of dread and all of those "what ifs" got stuck in his head."
It goes on to show Jonathan in a number of situation that are influenced negatively by his fears: Climbing a tree - what if I fall? Jumping into the pool - what if it's cold? Playing baseball - what if I'm bad and the other kids laugh? Painting - what if it's ugly? Trying a new food - what if it's yucky? BUT THEN, Jonathan looks that Whatif Monster straight in the eye and says "What if you're wrong?"! What if I made it to the top of that tree and I never slip or skin my knee? What if I jump into that pool and everyone thinks I look really cool? What if baseball is nothing but fun and I end up hitting a triple home run?You get the idea, right? Well, on the heels of a fantastic week last week imagining what the CF Care Model could and should look like at our second design meeting, I'm realizing that the complexities of the healthcare system far outweigh anything that I had realized, and those "Whatif" monsters are alive inside of all of us - patients, clinicians, parents, researchers - all in both negative and positive ways, and frankly in often seemingly opposing ways (my positive "What if!" is met with a negative "But what if?, and vice versa). The way that they hold back improvements in health and care is not only detrimental to the health of patients, but its unproductive and not a good way to grow.
How might we change all of those fears and worries into productive tests and collaborations? The anxiety that an idea brough to the table by a patient in todays system creates - "What if it's done wrong? What if it doesn't fit into our current system? What if someone else hears about it? What if it creates more work? What if we don't understand it?"
What if there is another way to learn, from and with one another! In trying something novel, what if I learn something new! What if it's been the missing piece all along! What if the idea spreads! What if it empowers otheres to take a more active role in self management, improving health outcomes and actually makes the jobs of those living and working inside of this system for chronic illness care better! What if we change the world!!
Maybe this is a quality that comes with being the parent of a child with a challening health situation. I wouldn't specifically consider myself a risk-taker, perhaps when I was younger, but loving this child with a disease that progresses every day, often times despite the best efforts of the patients and their care teams, it forces us to be pioneers, trying new things, some scary and some just intuitive, grasping onto the hope that we might learn something new, anything that could save our child.
Maybe it's also a difference of perspective. The things that I'm doing - self tracking, home spirometry, telemedicine to name a few - I don't view them as risky OR novel. People have been self tracking for years with pencil and paper, or their memories, and in fact a phone call to my nurse with a health update could be considered telemedicine. The difference is that it's outside of the expertise and comfort level of those that we are interacting with. What is my expertise as the patient? Who gets to make this call, to say that something is okay or not okay for a patient to do? When patients do no more than what is recommended by my healthcare team they are encouraged to be more engaged, but when they take the initiative and advocate for what they or their child needs, often for things that are risky or novel, they're often viewed as a rebel, creating more work and stress for an already overworked and overstressed care team. It's a tightrope we walk as patients, and it's not easy.
I believe that the best health outcomes will result from productive and meaninful collaboration, something that I've been fortunate to find with my care team in managing my sons health. We need an understanding of and appreciation for the different situations that we all exist within, a concept that was hilighted during our design meeting when we shared an empathy exercise called "Cards for Humanity". I challenge you to think about whatever you are advocating for or against from the perspective of the party sitting on the other side. I also encourage transparency - clinicians cannot help patients to improve if they don't know what they're struggling with, and vice versa.
A proposed design target of the work that we are doing to develop this care model of the future is this: "Ensure that all people with CF have access to optimal care and resources to achieve whole health/wellness and lead full, productive lives." I think that we need to acknowledge that “optimal care” is a dynamic term and the partnerships necessary to faciliate that will vary. There is a degree of quality that we need to ensure, but optimization is a relative term depending on both resources available and personal preference. What if we finally get this right?!