To improve your experience on Lilly TrialGuide, please use the latest version of Chrome, Firefox, Safari, or Internet Explorer, with JavaScript enabled.
This website is not optimized for your browser, as configured.
Experiences

Learning From Snowflakes

LTGBlogAuthors GuestAuthorIcon 20July2018
Guest Author
November 28th, 20164 minute read
Learning from Snowflakes Feature Image

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.

Jeri-Burtchell-242x300

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.

Tags: Advocacy,

Recent Articles

Lab Samples and Clinical Research 101 Feature Image

Lab Samples and Clinical Research: 101

Leigh Anne Naas Headshot
Leigh Anne Naas
April 19th, 20194 minute read

Lab samples provide some of the most important knowledge we gain in clinical research. Learn when, where and why samples are collected during a trial.

Patient interviewee and Lilly interviewer

The Balance of Clinical Trial Participation

Leigh Anne Naas Headshot
Leigh Anne Naas
March 28th, 20193 minute read

Melissa, a past Lilly clinical trial participant, sat down with us to share a bit about her research experience. Watch this video to hear Melissa's story in her own words.

Wale standing in front of wall with music notes

A Clinical Research Symphony

Leigh Anne Naas Headshot
Leigh Anne Naas
February 25th, 20194 minute read

For Wale, a physician who helps guide the strategy, design and procedural decisions for Lilly's clinical trials, clinical research is like an orchestra. Learn why.

BasketandUmbrellaStudies FeatureImage 6Feb2019-01

Clinical Trial Design: Basket and Umbrella Studies

Leigh Anne Naas Headshot
Leigh Anne Naas
February 8th, 20194 minute read

Newer approaches to clinical trial design have emerged, thanks, in part, to the power of precision medicine.

World Cancer Day 2019 Feature Image

Pediatric Cancer Experiences: Then and Now

Leigh Anne Naas Headshot
Leigh Anne Naas
February 4th, 20194 minute read

Meet two people who tackled cancer head-on as children and now are dedicated to contributing to the development of new cancer medicines.