Caregivers: An Untapped Resource for Clinical Research By Hannah Eccard, MA Caregivers provide substantial support to the health and well-being of patients in the US. One of their contributions involves helping patients search for, and participate in, clinical trials. Caregivers turn to Inspire for help finding and accessing clinical trials. My father [...]
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 [...]
Implementing patient centricity? By Monica St. Claire Over 1,000 employees from bio-pharmaceutical, medical device and associated supplier companies responded to the Aurora Project’s recent Patient-Centric Benchmarks Survey. Of those respondents, 91% said patient centricity is important, a 6% increase from 2016. But only 30% believe the industry can make it a [...]
Over Two-Thirds of Inspire’s Membership Want Clinical Trial Information By Richard Tsai Recently a member of a rare disease community on Inspire asked fellow members, “What should I know about clinical trials? Are they worth it? Any information would be helpful. Thank you.” Among the replies they received: “Unfortunately, we’ve not [...]
How R&D Teams Can Use Patient Centricity for Clinical Trial Optimization By Monica St. Claire In 2014, Tufts Center for the Study of Drug Development performed a comprehensive assessment of the use of social media and digital technology in clinical research. This forward-thinking study revealed that pharmaceutical, biotechnology companies and contract [...]
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 [...]
