patient voice

A dazzle of zebras: Ehlers-Danlos Syndromes

A dazzle of zebras: Ehlers-Danlos Syndromes By Hannah Eccard On their website, The Ehlers-Danlos Society explains why people with Ehlers-Danlos Syndromes (EDS) call themselves zebras. “Medical students have been taught for decades that, ‘When you hear hoofbeats behind you, don’t expect to see a zebra.’ In other words, look for the more [...]

On being a medical hero in the era of social media: Discussing clinical trial participation online

On being a medical hero in the era of social media: Discussing clinical trial participation online By Kathleen Hoffman, PhD “Garrett’s Hero Run” is not the name of a New York Times Bestseller or an up-and-coming blockbuster movie - though it could be. At the moment, it’s the name of a series [...]

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration By Sara Ray What happened when we compared research strategies used to obtain patient insights? We discovered that using multiple strategies is key to gaining usable understandings. In a recent collaboration between Inspire and the FDA, we compared and contrasted [...]

Rethinking patient engagement in clinical trials: Be part of the solution

Rethinking patient engagement in clinical trials: Be part of the solution By Kathleen D. Hoffman, PhD Seated in the waiting room of a large medical center, I overheard the bright eyed, young man behind the reception desk ask a new patient, “Would you like to learn more about participating in our [...]

What is a Virtual Advisory Board product?

What is a Virtual Advisory Board product? By Monica St. Claire Almost 60 percent of all clinical trial protocols have at least one amendment. Amendments lower the numbers of recruited patients as well as increase the cost of clinical trials according to Tufts Center for the Study of Drug Development Impact [...]

Patients MacGyvering: a resource for device and equipment manufacturers

Patients MacGyvering: a resource for device and equipment manufacturers To solve problems that patients actually have is a challenge. Companies miss opportunities when blindly offering patients what people other than patients say they need. When medical device or equipment manufacturers are looking for ideas or trying to think of ways to improve [...]

Diversity Initiatives? Are They Worth It?

Diversity Initiatives? Are They Worth It? When I asked audience members at a panel discussion during the inaugural Clinical Leader Forum, held in Philadelphia on May 10-11, 2017, three questions about diversity in clinical trials, I got some surprising answers. The questions were: How many attendees come from organizations that value diversity? [...]

Video Vignettes: Through Their Own Lens: Neurofibromatosis

Video Vignettes: Through Their Own Lens: Neurofibromatosis Our “Through Your Own Lens” initiative invited members to share their personal stories through short videos. Patients have been describing their disease history, their feelings about their disease and thoughts about Inspire. Living with Neurofibromatosis Neurofibromatosis is a condition affecting the nervous system, causing tumors [...]

Find Your SMART: A blueprint for patient engagement

Find Your SMART: A blueprint for patient engagement The drug development process has historically siloed pharmaceutical companies and patients until the time comes for clinical trials. Drug development is a complex, expensive process that requires a lot of expertise. But patients are experts on their own experience of illness and their insights [...]