patient community Archives - Inspire Corporate

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire By Judy Chandler, MPH, CHES Inspire launched a melanoma patient and caregiver support community in 2014, but was looking for a non-profit partner to contribute melanoma expertise and resources to community members. In 2017, the Melanoma Research Alliance (MRA) started expanding its efforts beyond research to also include patients and caregivers. That’s when the MRA and Inspire joined forces and launched the Melanoma > Exchange Support Community on Inspire. Inspire is a true partner for MRA in our work to better serve [...]

Patient Experience Data and the Role of Social Media

Patient Experience Data and the Role of Social Media (Part 1) The 21st Century Cures Act, passed in December 2016, defined patient experience data as data that: “(1) are collected by any persons (including patients, family members and caregivers of patients, patient advocacy organizations, disease research foundations, researchers, and drug manufacturers); and (2) are intended to provide information about patients’ experiences with a disease or condition, including— (A) the impact of such disease or condition, or a related therapy, on patients’ lives; and (B) patient preferences with respect to treatment of such disease or condition.” 1 [...]