Always check primary sources…. This was the title of a brief message sent to me from Paul Wicks, our head of research here at PatientsLikeMe. He was referring to a quote I have used as my email signature for the last few years; he had discovered I had wrongly attributed it to Archimedes. “To measure… Continue reading “To Measure Is To Know”
Category: Patient Experiences
Epilepsy Awareness Month: The Alternative Way
It’s Epilepsy Awareness Month, so let’s continue with our series of blogs about our Epilepsy Community members’ experiences with this disease. Below is an interview with member “akamine2525.” Earlier this year, she gave the following interview in our monthly newsletter. Want to know what keeps akamine2525 motivated, who she admires and how epilepsy has affected… Continue reading Epilepsy Awareness Month: The Alternative Way
PatientsLikeMe at Health 2.0: Paths to Insight
Last month, I spoke once again at the Health 2.0 conference in San Francisco. The video of my presentation is now online. Here’s a snapshot of what I covered in the 6-minute talk: The wealth of data shared in a PatientsLikeMe treatment reports (e.g., what fibromyalgia patients are sharing about Cymbalta and Lyrica) A suite… Continue reading PatientsLikeMe at Health 2.0: Paths to Insight
Epilepsy Awareness Month: What do you know about Epilepsy?
Launched earlier this year, the PatientsLikeMe Epilepsy community now has more than 3,000 patients. In honor of Epilepsy Awareness Month, here’s a snapshot of what patients like you are sharing and learning about in this community. Did you know… You can search for patients by more than 10 seizure types, such as simple partial, myoclonic,… Continue reading Epilepsy Awareness Month: What do you know about Epilepsy?
Epilepsy Awareness Month: The Beauty and The Turbulence
Did you know November is Epilepsy Awareness Month? In honor of the month and to help raise awareness of epilepsy, here is the first in a series of blogs about our Epilepsy Community members’ experiences with this disease. To kick us off, let’s meet tonialpha, a three-star member and PRO who recently sat down with… Continue reading Epilepsy Awareness Month: The Beauty and The Turbulence
The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude
I don’t think about what I can’t do, I think about what I can do. – Cher441 Over the past month, we’ve heard several stories about how PatientsLikeMe Parkinson’s Disease community members came together online and made a quilt that has traveled all around the world providing warmth, comfort and a sense of unity for… Continue reading The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude
The Patient Voice | Episode 4: Weaving An Inheritance
“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here! For our next interviewee, meet Aunti J. Like many others who contributed to… Continue reading The Patient Voice | Episode 4: Weaving An Inheritance
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.… Continue reading What Data Do We Sell? A Continued Discussion about “Data Scraping”
The Patient Voice | Episode 3: When a Community “Becomes Family”
“I’ve met a lot of people from all over the world, we are all one happy family.” – Vigwig Around and around we go, strap on in for Episode 3 of our podcast series, “The Patient Voice.” To continue with the PatientsLikeMe Parkinson’s Disease (PD) quilt story, our guest today is community member VigWig. A… Continue reading The Patient Voice | Episode 3: When a Community “Becomes Family”
Mental Health Awareness: What do you know about Mood Conditions?
In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on! DID YOU ALSO KNOW… You can search for patients under… Continue reading Mental Health Awareness: What do you know about Mood Conditions?