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
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
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
The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer
Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score. Now, we’d like to share our interview with lead study author Dr. Thomas Meyer,… Continue reading The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer
Behind Every Piece of Data Is a Patient
(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.) Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries. According to the US Department of Health & Human Services’ Agency for Healthcare Research… Continue reading Behind Every Piece of Data Is a Patient
NFL Player Steve Gleason’s Inspiring ALS Story
Did you catch the pre-game show before Sunday’s Super Bowl XLVI? If not, you missed a beautiful NBC piece about Steve Gleason, who spent seven seasons as a safety with the New Orleans Saints. Diagnosed with ALS a year ago, Gleason now walks with a cane, and his speech has been impacted. The new father… Continue reading NFL Player Steve Gleason’s Inspiring ALS Story
Life with Parkinson’s Disease: What We’ve Learned
On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD). Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members. Taking a look at the makeup of our PD community,… Continue reading Life with Parkinson’s Disease: What We’ve Learned
Results from PatientsLikeMe Diabetes Poll
FOR IMMEDIATE RELEASE PATIENTSLIKEME POLL REVEALS UPCOMING HOLIDAY SEASON MOST DIFFICULT FOR DIABETES PATIENTS CONTROLLING BLOOD GLUCOSE PatientsLikeMe Introduces Daily Glucose Monitoring Feature in December CAMBRIDGE, MA – November 22, 2011 – According to a recent PatientsLikeMe® Poll, one out of every two type 2 diabetes patients (50%) and nearly two out of every three type… Continue reading Results from PatientsLikeMe Diabetes Poll