Philadelphia, PA— Live from EFP ‘18: “Can’t we all just get along? Please.” This was the ask (well, plea) from self-defined “medical mom” Meredith Hardy during this morning’s eyeforpharma panel focusing on developing effective patient support ecosystems. While the panel offered insights from esteemed industry and FDA executives, there was a pause after this question. And reflection.
As Meredith, mom of two boys who are “rocking it” while living with mitochondrial disease and founder of We Love Hope, continued on she said, “Patients are exhausted with fragmentation.” She shared how her experience has shown her that there is so much fragmentation and it’s just so exhausting – as a patient and a caregiver. And it’s all around. For example, some clinicians are frustrated with the research staff in their own hospitals for not focusing on patients. Researchers call the clinical staff cowboys. There is frustration between the insurance companies and care teams. Patients are trying to navigate all of this and get the information and support they need. It goes on and on. “Don’t we all have the same goal? We are on the same team. Right?”
Between this very salient point in the conversation and her earlier story of being an educator and talking through where her elementary teaching experience intersected with her experience as a medical mom, it reminded me of one of my favorite poems and books, “All I Really Need to Know, I Learned in Kindergarten,” written by Robert Fulghum.
The healthcare system and what we are navigating as patients, caregivers, industry, and solution-providers is becoming increasingly complex. And that seemingly simple question Meredith posed also has multi-faceted layers of complexity - we all know it can seem simple, yet viewpoints and vantage points can add to complexity, misalignment, misunderstanding, and to fragmentation. But if the goal is putting the patient at the center, maybe it doesn’t need to. Maybe a few key points from Fulghum would be good to reflect on:
- Share everything
- Play fair
- Don’t hit people
- Clean up your own mess
And maybe the most relevant here: When you go out into the world, watch out for traffic, hold hands, and stick together.
We’re all in it together, right?
I’ll be thinking about this as I listen to the rest of today and as I head home – and think about where we go from here. I'll also think about my past life teaching in a Kindergarten classroom and now raising a kindergartener. Sometimes, we may not realize how salient experiences like these can make you reflect perhaps a bit differently. Thanks, Meredith!
