Posted by Jennie David on April 09, 2018
One of the greatest gifts I have ever received is a small pin that’s likely worth about $5. I imagine that most people who look at the pin, proudly affixed to the collar of the lab coat I wear during clinical placements, assume it’s a red flower. But it’s not a pin of a red flower. It’s a pin of a stoma.
Given to me by a stoma nurse I’m working with on a research study, it’s the unlikely symbol that unifies my personal experiences living with IBD and an ostomy and my clinical and research interests. It’s this interwoven identity that gives me – and many others living with chronic health conditions who pursue clinical work – a unique perspective on medical care and research. Perhaps it’s why I ask if patients want their hospital room doors closed when I leave, because I tend to find hospital floors noisy and prefer the door closed. Perhaps it’s why I insist on using patient-centered language when writing in medical charts, because I want my providers to see me as a person first and not simply my disease. But it’s definitely why I was over-the-moon thrilled when an article I co-authored – as a patient and a researcher – was published earlier this month.
Within ImproveCareNow, involving patients and parents in clinical care, research, and quality improvement initiatives is a cultural backbone of the network. It’s so second-nature that we rarely think twice about the collaborative network that prioritizes shared goals over traditional academic hierarchies. But as I move through life outside of ImproveCareNow – through graduate school, clinical experiences as a training clinician, and my own healthcare – I am frequently reminded that the cultural norm of clinical care is far from that of ImproveCareNow. It is intuitive to me, like other members of the ImproveCareNow community, that engaging everyone at the table – patients, parents, and clinicians of all kinds – allows our community to co-produce care that incorporates the inherent expertise of each group.
To change the cultural norm in medicine is a daunting task, but there is a place to begin: publications. Publishing is academic currency, by which ideas can spread like wildfire in a way once the information is distilled into a manuscript. It is a way to translate the passion and success of ImproveCareNow to clinicians beyond the network, to begin to share the seemingly bold idea that patients and parents are a key part of care and research.
Our paper, titled, ““A Guide to Gutsy Living”: Patient-Driven Development of a Pediatric Ostomy Toolkit,” was published in Pediatrics earlier this month and summarizes the Patient Advisory Council task force-led project to co-produce a resource for pediatric patients with IBD and ostomies. To our knowledge, our paper is the first to describe how pediatric patients and parents identified the need for the resource, developed the resource according to quality improvement guidelines, and sought out clinicians to vet the medical information in the toolkit for accuracy. Further, our paper is co-authored by patients (who are also researchers), a step towards establishing the interest and capacity of pediatric patients and parents to be engaged in every step of the research process, from designing a study to publishing the results. Our paper represents patients as ImproveCareNow understands us – as integral contributors who have something meaningful to say.
I have little doubt that my stoma pin will continue to be a treasured item, gifted to me by a provider who saw and respected my value as both a patient and a researcher. And so, each time I swing my lab coat over my shoulders, I smile at the stoma pin that reminds me of who I am – a patient, a clinician-to-be, and a researcher – and continue to imagine a clinical landscape where everyone else can see that, too.
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Read more posts by Jennie on LOOP
Download a free copy of the Ostomy Toolkit
Read: "New guide helps kids, adolescents living with ostomies"
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