Search Results for: transparency

Putting patients first: An interview with partners CoPatient and PatientsLikeMe

                What’s this partnership all about? Michael- Every day on PatientsLikeMe, our members are sharing their real-world experiences. They’re getting real support from people just like them, people who get what it’s like to have their condition and be on that journey. In the forums, they chat about […]

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A day in the life of Social Media Specialist Jesse Smith

Our members give us a glimpse of their personal lives every single day when they share through their PatientsLikeMe profiles, and as the days tick down until Thanksgiving and Christmas, we’re getting into the holiday spirit by sharing a little about ourselves with you. Jesse Smith is the Social Media Specialist on the marketing team

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Psoriasis, Adherence and More: An Interview with Dermatologist Dr. Steve Feldman

Dr. Steve Feldman, MD, PhD, is Professor of Dermatology, Pathology & Public Health Sciences at the Wake Forest University School of Medicine. The author of more than 500 peer-reviewed medical articles, Dr. Feldman is well-known for his research studies focused on patients’ adherence to topical treatments as well as for founding www.DrScore.com, an online doctor

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The Importance of Open Access: An Interview with Patient Advocate Graham Steel

A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe.  Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific

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Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)

2010 was a strong year for business development at PatientsLikeMe.  Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two.  Here are a few of our successes and challenges over the year. Successes 1.  New Partnerships, New Communities In the first

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What Data Do We Sell? A Continued Discussion about “Data Scraping”

In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you – members of the PatientsLikeMe community – knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe.

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FDA’s New Guidance on Patient-Reported Outcomes

We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as: “A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” The self-report

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Business Development in Health 2.0: Blazing the Trail to Profitability

Much has been made about the potential for viable businesses in the health 2.0 movement. In short, these articles and blogs (among others) openly and appropriately question the long-term viability of the space: Seattle Post-Intelligencer Wikinomics Blog Chilmark Research Blog IHealthBeat San Francisco Chronicle Are they right? That answer is unclear, but they are right

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