A few months ago, I was sitting in the waiting room at our CF clinic for a quarterly appointment and I was overcome with anxiety. As a believer in the importance of the new infection control guidelines, I worried that my son would pick up a new bug that would be as detrimental to his health. I started to tweet about it with the undertone of "there must be a better way". From across the world, someone in Australlia shared an awesome paper and subsequent link to a telemedicine study that was taking place in Australlia. I dug into a little, and then went back to Twitter, sharing my frustration that not only are we not utilizing these tools, but we're not even aware of them! Some colleagues saw my messages, directed at them, and shared them with the CF Care Team. They went back and forth over email, sharing the opportunities that they saw or concerns that they had with a novel tool like telehealth. After quite a few messages had been shared, the email chain was forwarded to the department chair who said "We will bring this to the CF center at CCHMC to be best in class". As it turns out, our hospital had just started a Telemedicine Department, and we scheduled a meeting to figure out how to start testing this model.
The total elapsed time from my first tweet through the commitment of the department to move forward with this model to the scheduling of a meeting: 2 days.
On Saturday afternoon, I was having a conversation with Roni Zeiger. Here's what I said:
" I'm thinking about novel ways to do research and disseminate useful info to patients and caregivers, and also to sort of advertise valuable research opportunities so that patients are aware of them. Right now, if someone wants to do research on CF patients, they [typically] go through the CFF and then they direct them to the centers where the center directors can pluck out who might be a good candidate for a given research opportunity. I hate this because the doc is deciding what I get and don't get to participate in through awareness alone."Today, this was launched on Smart Patients: https://www.smartpatients.com/cystic-fibrosis/trials. It took only 5 days from the birth of this idea to design and implement the tool. (high five to Roni!)
While these happen to be examples of work that I've done, patients throughout the healthcare system (like Stacey Lihn and Justin Vandergrift) are innovating the exact same way. WE DON'T HAVE TIME TO WAIT. As I stated in an earlier post, I have a hard time leaving the fate of my kid up to researchers alone. I know and appreciate that a ton of great research is being done to find new and novel treatment options to help patients with Cystic Fibrosis, but it's not happening fast enough and that's not okay with me. It's especially not okay when we (patients and caregivers) are showing ways that we can do it bigger, better, faster, stronger....and for less money. The knowledge and expertise that we hold is under appreciated and under utilized. We are desperate to partner with doctors and researchers to create new treatment options and cure diseases, but they seem to be hung up on the fear of what could go wrong rather than looking at the opportunity for what could go right!
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. I fear that the Whatif Monster has infiltrated the system, and I spend my days trying to allay fears. The most admirable scientists and doctors, device manufacturers and insurance providers need patients to hold their hands and share their stories to allay those fears. We need to do this together.