Blog Dec 20, 2016

Rare Disease and Social Media: Making Connections

Rare Disease and Social Media: Making Connections Being Alone and Disempowered Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases.  Now, on [...]

Making Patient Engagement Work

Making Patient Engagement Work 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 [...]

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 [...]

How Does Pharma Learn To Speak “Patient”?

How Does Pharma Learn To Speak “Patient”? After passage of the 21st Century Cures Act in December 2016, speaking “patient,” is more essential than ever. What does speaking “patient” mean? [...]

A Researcher’s Goldmine: Quality, Motivated Participants, Fast

A Researcher's Goldmine: Quality, Motivated Participants, Fast Seventeen years.  That’s the average lag time between early clinical research efforts and real, positive, public health, pharmaceutical, or clinical interventions.1  Contributing [...]

Embracing The Patient-Centric Culture

Embracing The Patient-Centric Culture American physicist and philosopher, Thomas Kuhn said that throughout history, science goes through periods of “normal science” and change.  In periods of “normal science,” everyone is “committed to the [...]