Patient advocate Jeri Burtchell recently shared her journey from her diagnosis of multiple sclerosis (MS) to clinical trial participation to becoming an advocate for the patient perspective on Eli Lilly and Company blog LillyPad.
She and Abbe Steel, founder and CEO of HealthiVibe LLC, work together to empower researchers and patients by collecting patient insights in the clinical trial process.
Until Burtchell's participation in a clinical trial, MS was slowly stealing her independence. While the trial medication gave her back her life, she was frustrated that the researchers did not collect experiences -- only data.
After meeting Steel, the pair began working together to make the clinical trial experience more patient-centric. By gathering patients' impressions and insights, the added knowledge could help researchers develop and conduct better studies.
Among the successes of the partnership is the survey platform. It gathers information and insights from the patient's perspective while he or she is participating in an ongoing clinical trial.
"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," Burtchell said. "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."
Burtchell continues to spread awareness of clinical research and educate researchers on patient needs through Partners in Research and HealthiVibe.
