Patients Discuss and Debate the Medical Outcomes from Generic Formulations By Jeff Terkowitz When mature products face the introduction of generics, patients are often considering, or asked to consider, switching their medications. At that transition, there is a high need for Real World Data documenting patient experiences. What happens to medical outcomes [...]
HEOR: Incorporating the Human Costs and Benefits into Drug Value By Kathleen Hoffman, PhD, MSPH In a 2007 article, “Pinning Down the Money Value of a Person’s Life,” NY Times reporter Alex Berensen wrote, “HOW much is your life worth? How about a year of life? How much is your vision worth? [...]
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 [...]
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 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 [...]
