social media interactions Archives

Learning from patients to improve their experiences with treatments – An Inspire Insights: Discover Case Study

Learning from patients to improve their experiences with treatments - An Inspire Insights: Discover Case Study By Monica St. Claire Around 68,000 people in the US are diagnosed with bladder cancer each year. Since 2007, in partnership with the Bladder Cancer Advocacy Network, Inspire has been providing support to patients and caregivers living with bladder cancer. Today, the Bladder Cancer Advocacy Network Support Community on Inspire has over 32,000 members and an additional 21,320 worldwide visitors per month. As the leading social networking site in the US, Inspire is home to [...]

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 [...]