Raise Your Voices: Social Network Provides Safe Place for Patients to Share Stories and Influence Research

WCG Talks Trials

In this episode, Brian Loew, founder and CEO of online patient portal Inspire, talks about the value to patients and caregivers of providing a safe and trustworthy online social network--a “peaceable kingdom,” as he calls it.

Millions of patients representing 3,500 diseases--including many rare ones --come to Inspire.com for online community discussions focused on their own particular disease. The platform provides a place for meaningful conversations among patients and caregivers. It also allows them to share their insights in ways that advance clinical research. Patients want to support research, sometimes even initiating it themselves. And, more than ever, Loew says, researchers are interested in patient-reported information. If patients agree, they can also be connected to relevant clinical trials.

Loew emphasizes that across all the conditions and forums, patients always have control over what data they share and where they share it--and in his experience, the more control they have, the more willing they are to share it.

The recently added coronavirus section (www.inspire.com/coronavirus) also features video testimonials from patients with a variety of conditions describing why COVID-19 is disrupting their medical routines and threatening their health.

Loew is a frequent speaker and writer on the topics of health-focused social networks and digital health. He sits on the boards of the Robert Packard Center for ALS Research at Johns Hopkins, and New Jersey Goals of Care. He was a “Red Jacket” recipient from PharmaVOICE magazine for his contributions to the industry.