Research and Development

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 [...]

Implementing patient centricity?

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

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

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

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 [...]