Caregivers: An Untapped Resource for Clinical Research

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 was diagnosed [date] with stage 4 [type] cancer. He has been on numerous rounds of chemotherapy and last scan showed the cancer has progressed…We are now waiting news of any clinical trial he is eligible for…. He is in stable condition now without any issues... [...]

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 patient and caregiver generated online communication with the results of one of FDA’s Voice of the Patient meetings. The Data Sets Inspire’s membership includes over 350,000 patients and caregivers living and coping with rare diseases. In the last three years, there has been 203% growth [...]

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 research?” I smiled and thought, this is part of the solution. But it is a small part. I’ve been going to the same clinic for five years and today is the first time I’ve heard this question. I wondered if anyone would ask me - [...]

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 reality. Knowing how to be patient centric seems to be the missing ingredient. Only 22% of respondents agreed with this statement, “We know exactly what and how to teach [patient centricity] to our people.”1 While many articles call patient centricity a “mantra” and “cliché,”2 Inspire [...]

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 had many opportunities to participate in [rare disease] clinical trials. In my opinion, if a pharmaceutical company, medical device developer, etc. has gone through the required steps to get to human trials for [rare disease]--I’d absolutely want to help them by participating!” In another rare [...]

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 research organizations (CROs) had not implemented strategies to effectively utilize and capitalize on the patient and caregiver content available.1 Today, Inspire’s products and services address these clinical trial optimization essentials. Specifically, our tools provide pharmaceutical and biotechnology companies’ research and development (R&D) teams as well [...]

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 should be more integral to drug development. The pharmaceutical industry is already on the path towards integrating the patient experience early and often in the drug development process, partly because of the 21st Century Cures Act, which was made law in 2016 [my colleague Jeff [...]