Video Vignettes: Through Their Own Eyes: Living With Ostomy

Video Vignettes: Through Their Own Eyes: Living With Ostomy “The same thing could be said about guys who go to war, that unless you've been there you can't really understand what it is like and so your really best buddies are the ones that have been warriors like you…Those are the people you can really relate to the best, even more so than your own family.”  ~member of the Ostomy Support Community on Inspire. People who have been through the operation that removes all or portions of their colons, ileums or bladders must live with and adapt [...]

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Dec 2017By |0 Comments

Patient-Centricity, Health Literacy and Pharma

Patient-Centricity, Health Literacy and Pharma According to an IBM white paper, “Patient-centric models put the needs of the patient first, but require greater patient responsibility and accountability.”1 This is a challenge.  Making the best possible decisions about one’s health requires a set of skills and resources that about 90 million people - nearly half the US adult population - lack.2 What is health literacy? Health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions,”3  which is a simple way to [...]

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May 2017By |0 Comments

Making Patient Engagement Work

Making Patient Engagement Work (Part 2) Last week’s post Patient Experience Data and the Role of Social Media Part 1,  discussed the wealth of information about the patient experience that can be found in social media.  Social media interactions are becoming more and more important as patients get involved in the decision making process around their health. Information exchange is essential to these interactions.  Patient engagement--bringing the patient voice into research, development and through the entire product life cycle--requires transparency. Pharmaceutical companies are behind the curve on this.  While a 2015 survey of 75 pharmaceutical companies found [...]

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Apr 2017By |0 Comments

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 [...]

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Apr 2017By |0 Comments