Learning From Snowflakes
Editor's note: Jeri Burtchell is a renowned patient advocate with first-hand experience as a clinical trial participant. Through her work at Partners in Research and HealthiVibe, she spreads awareness of clinical research among the public and educates clinical researchers on the needs of the patient.
You’d never know, to look at me that my head is spinning and I feel like I’m on a Batman set straight out of the 60s most of the time. Or that short-term memory loss will strip your name from my brain the moment you introduce yourself. When you shake my hand there’s a mild buzzing sensation and your skin feels like a fuzzy glove to me.
How could you know, when I go to sleep at night, that I feel like an unwilling marionette as my legs twitch and jerk to invisible strings, or how exhausted that makes me feel come morning as I face another day?
You couldn’t know, unless you asked.
I live with multiple sclerosis, one of those “snowflake” diseases where no two patients have the same set of symptoms. According to my neurologist who diagnosed me in 1999, I had the “most aggressive case” he’d ever seen. He said it wouldn’t be long before I’d be severely disabled. For the next eight years it seemed that his prediction would become my reality as I lost more and more of my independence to this disease.
Then, quite by chance, research changed everything.
When my neurologist had a stroke and I had to find another doctor, my new path led to a clinical trial. That was 2007, and ever since I started the medicine, my relapses have all but stopped. Research gave me my life back.
Taking part in that study was a fascinating experience from the patient perspective, but I often felt frustrated that despite all the measurements, procedures and observations, they didn’t truly know what it was like to be in my shoes. I was just a donor of data, a vending machine dispensing blood, urine and endless pages of QoL questionnaires. Nobody was collecting my experience in the same way they collected my data. They never really saw my snowflake.
Then came the conference that would change all that.
I met Abbe Steel after I spoke to a room full of pharma executives about my clinical trial experience at a conference in Boston and discovered we were both passionate about making “patient centricity” into something more than a buzzword. She not only saw the snowflake, she recognized the collective blizzard of patient insights that might be harnessed in a collaborative way to empower both researchers and patients to conduct better studies.
We wanted to bridge the gap between patients who had so much experiential knowledge to share and the researchers who needed to learn from them. So, with no model for this type of activity, because it had never been done before, she launched a new business and brought me on board.
Since 2014, we’ve worked together on a global scale to bring the patient perspective to life for our clients. This is real collaboration, empowering pharma to conduct better studies with more meaningful outcomes by working together to understand the human side of research. We’ve developed many services I’m proud of, but the gem among them has to be the survey platform we built to gather insights from clinical trial participants while they are in an ongoing study.
I think about how far we have come, to the real changes that have been made as a direct result of these collaborations and it fills my heart with pride. It’s been nearly a decade since I was first randomized into that clinical trial and I didn’t feel like a “partner” in the process at all. So much has changed. I’m excited to be a part of this cultural shift within the industry to make sure everyone’s voice is included, to understand everyone’s experience.
Because everyone is different. We all face our own struggles, fight our own battles. The patients are out there, eager to share how their disease or condition impacts their life.
All you have to do is ask.
Blog post originally appeared on LillyPad.
We always welcome input from the larger clinical research community—patients, caregivers, researchers—and periodically feature their voices on our blog. Hearing from them gives us new viewpoints and insights in making research better.