What if you launched a clinical trial and no-one could make it to a study site?

What if you launched a clinical trial and no-one could make it to a study site?

What if you launched a clinical trial and no-one could make it to a study site?

VOZ worked with a company that was interested in opening a trial in a very rare disease. In a move that is not—unfortunately—all that common, the company decided to gain more understanding of patients before creating the protocol for the study.

Every patient we met was young, and most were in large motorized wheelchairs. The chairs had toggles and switches to control movement, and they were all reclined at about a 45-degree angle.  Their disease causes progressively decreased mobility, including restrictions on how the body can bend. As it turns out, this is important for trial accrual. 

When conducting a clinical trial with a very rare disease, transportation costs are part of the calculation.  For patients with this particular disease, travel means a first-class ticket because their body won’t bend enough to fit into an economy class seat.  More importantly, travel means the very real fear that their wheelchair will arrive damaged.  

Most patients in the room had experienced arriving at a destination only to find their wheelchair broken to the point it could not be used.  Without the wheelchair, they were immobilized and completely dependent on someone else.  These patients were very clear: “Unless you can guarantee that my wheelchair will be available to me, I would never enroll in this trial!”

They offered a simple recommendation—have a wheelchair technician on call when patients travel to the study site.  This suggestion helped prevent the company from launching a trial that no patient would consider.

This is not a story about a wheelchair, or about mobility.  It is a story about listening. Before meeting with patients this company talked with doctors, looked into research involving chart reviews—all the standard practices.  Working with VOZ, however, the company gained insights their previous research could not uncover and which, ultimately, saved them from making a costly mistake.  

#ShowYourRare #ShowYouCare #RareDiseaseDay

Categories: Patient Advocate Patient Centricity Patient Engagement Rare Disease

About The Author [ Tim Turnham ]

Tim Turnham, PhD is a vice president at VOZ. Tim approaches patient engagement with the conviction that patients who are well informed and well supported live longer and better. He has a record of success in finding mutually beneficial connections between industry and patient advocacy groups to help achieve this goal. Tim has worked in pediatrics, HIV/AIDS, disabilities, and oncology, maximizing the insight and value that patient advocacy groups and industry can achieve through collaboration. Tim has spent countless hours listening to patients and caregivers, and helping give perspective to their experiences. In addition, Tim has worked closely with academic researchers, including convening two summit meetings that resulted in white papers on critical issues of cancer treatment. Tim holds a BA in microbiology, an MDiv, and a PhD in biblical ethics.