Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Her patient… Continue reading How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Category: Research
PatientsLikeMe Exhibits at the American Academy of Dermatology Summer Meeting
As you know from our recent blog post, August is Psoriasis Awareness Month, and the psoriasis community at PatientsLikeMe has nearly 2,000 members. It’s only fitting that PatientsLikeMe spent last week connecting with others focused on skin health at the American Academy of Dermatology (AAD) Summer Academy Meeting, an annual educational event for dermatology-focused medical professionals.… Continue reading PatientsLikeMe Exhibits at the American Academy of Dermatology Summer Meeting
Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
You may recall that in July we shared a video about Doctors 2.0 and You, a conference focused on how physicians are using web 2.0 technology. Today we’d like to present a real-life example of this concept: Dr. Jim King, MSc, MD, FRCPC. A pediatrician at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa,… Continue reading Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
PatientsLikeMe and Merck Establish Health Information Collaboration Focused on Psoriasis
Patient-Based Research Aims to Produce New Insights Into Most Common Autoimmune Disease in U.S. CAMBRIDGE, Mass. — Aug 13, 2012 — PatientsLikeMe announces it has entered into a collaboration with Merck, known as MSD outside the United States and Canada, to evaluate the impact of psoriasis on patients and to inform a novel approach to improving outcomes. “A… Continue reading PatientsLikeMe and Merck Establish Health Information Collaboration Focused on Psoriasis
Know Thyself. Quantify Thyself.
Are you someone who likes to track things about yourself? For example, do you keep an exercise log of how many reps you did – or a food journal that details what (and how much) you consumed? Do you monitor your health and disease progression at PatientsLikeMe? If so, you might not know it, but… Continue reading Know Thyself. Quantify Thyself.
Navigating Healthcare on Twitter
More than five years after founder Jack Dorsey sent the very first “Tweet,” Twitter has exploded into a social media behemoth. Today, billions of real-time Tweets are sent each year about all manner of subjects – including healthcare. But how in the world do you keep up with all of them? That’s exactly the conundrum… Continue reading Navigating Healthcare on Twitter
PatientsLikeMe Researchers Score a Hat Trick
The term “hat trick” originated in 1858 after English cricketer HH Stephenson successfully bowled out three batsmen with consecutive bowls and he was presented with a hat to commemorate his feat. In June, PatientsLikeMe’s research team scored a hat trick of our own by publishing three new studies in scientific journals in just four days,… Continue reading PatientsLikeMe Researchers Score a Hat Trick
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… Continue reading The Importance of Open Access: An Interview with Patient Advocate Graham Steel
Learning Your Personal Genetics: An Interview with PGen Study Participant PF Anderson
Recently, PatientsLikeMe sent a message to our members about an opportunity to participate in the Impact of Personal Genomics (PGen) Study, led by researchers at Harvard and the University of Michigan. Each of the 1,000 study participants receives personal genomic testing services at a significantly subsidized discount. Using a series of surveys, the investigators will… Continue reading Learning Your Personal Genetics: An Interview with PGen Study Participant PF Anderson
Why Should I Participate in a Clinical Trial?
“Before me, there were hundreds and thousands of other people with Parkinson’s who participated in clinical trials that gave me the ability to have the medications that I take today. If people today do not participate in clinical trials, there will be no cure. There will be no new medications.” – Parkinson’s patient Jean Last… Continue reading Why Should I Participate in a Clinical Trial?