Mark Twain popularized the notion that there are three kinds of lies: “lies, damned lies, and statistics.” But there’s a cure for bad statistics, and that cure is openness. When our study of the effects of lithium in ALS was published in Nature Biotechnology, we not only presented the usual background and analysis, but we… Continue reading Giving Health Statistics a Good Name
Calling All Families Affected by Autism
Back in April, we wrote a blog post observing Autism Awareness Month. At that time, we had just over 100 members with an autism spectrum disorder (ASD). Now, just two months later, we’re pleased to report that our ASD membership has more than tripled with over 350 members reporting ASD and nearly 100 reporting Asperger’s… Continue reading Calling All Families Affected by Autism
It’s National HIV Testing Day
Have you been tested for HIV recently? Yes, you. As we wrote in a recent blog, an estimated one in five people with HIV in the US are unaware of their infection. That “one” could be you or someone you know. So instead of wondering, find out your status today during National HIV Testing Day, now… Continue reading It’s National HIV Testing Day
Putting a Spotlight on Migraines
In February 2011, CBS Reporter Serene Branson was reporting live at the Grammy Awards when her speech became slurred and incoherent. As the video soon went viral, many speculated that she’d suffered a stroke or worse. In fact, Branson had suffered a complex migraine, a special type of migraine with aura where marked neurological symptoms… Continue reading Putting a Spotlight on Migraines
PatientsLikeMe Announces Video Contest Winners
CAMBRIDGE, Mass. — June 23, 2011 — Today, the health website PatientsLikeMe reveals the winners of its first-ever “Express Yourself” video contest in which members were asked to answer the question – “How has PatientsLikeMe changed your life?” Congratulations to these top winners chosen across three different categories: Most Creative Presentation: tiredoftired of New Jersey for Depression Feels Like Most Inspiring… Continue reading PatientsLikeMe Announces Video Contest Winners
Data Mashups, “Wow Week” and the Fruits of Experimentation
Recently, I had the pleasure of helping to represent PatientsLikeMe at the 2nd Annual Health Data Initiative Forum, which is known as “Health Data-Palooza” to its friends. (See our first blog post about this event here.) The forum was conceived as a way to showcase the wonderful things that people are achieving with open government… Continue reading Data Mashups, “Wow Week” and the Fruits of Experimentation
Turning Stories into Data…and Data into Knowledge
How do you make sense of all the information and stories that come with chronic illness? That’s exactly the challenge that the Patient Experience Team has taken on at PatientsLikeMe. Our goal is to create data visualizations that help you gain insight into your health, recognize emerging patterns and learn from one another’s experiences. Recently,… Continue reading Turning Stories into Data…and Data into Knowledge
Let’s Hear What Men Have to Say
It’s National Men’s Health Week, and as a follow up to our blog on Monday, we thought you might enjoy hearing the perspectives of four male members of PatientsLikeMe – one with MS, two with Parkinson’s disease and one with HIV. Men may make up a smaller percentage of our 105,000+ patients, but their contributions… Continue reading Let’s Hear What Men Have to Say
PatientsLikeMe and BBK Worldwide Join Forces to Bring Mass Patient Exposure to the Clinical Research Process
CAMBRIDGE, Mass. — June 14, 2011 — Today, PatientsLikeMe, the leading online health platform, and BBK Worldwide, a pioneer in healthcare marketing and patient recruitment, announce an alliance to jointly offer their services to pharmaceutical companies and other industry stakeholders interested in enhancing patient recruitment and retention for ongoing and upcoming clinical research studies. Both companies have a long-standing commitment… Continue reading PatientsLikeMe and BBK Worldwide Join Forces to Bring Mass Patient Exposure to the Clinical Research Process
Let’s Talk About Men’s Health
Did you know that, on average, American men are more likely to live sicker and die younger than American women? This has been called “the silent health crisis in America” by Dr. David Gremillion of the Men’s Health Network, and it’s one of the startling health statistics for men being brought to the surface during National… Continue reading Let’s Talk About Men’s Health