While attending a session about crowd-sourcing cures for rare disease, I was struck by the need for credible scientific information accessible by patients. But the conversation also raised questions for me about how we can get patients to trust science again and generate credible information from anecdotal patient experience. There has to be a better way for patients to get the information they need to thrive.
Read MoreThere are dozens of terms being used in the patient-focused policy space. I try to make sense of some of them, but a cohesive policy framework would help create consistency around how we describe patient-focused data and policy activities.
Read MorePlanet formation provides an unlikely metaphor for rigorously assessing the patient experience. When individual patient stories are objectively assembled using scientific methods, they gain weight and the ability to influence decision-makers.
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