PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one. Earlier this fall, the venue for this conversation was the annual… Continue reading Structuring and Presenting the Patients’ Perspective at AMIA
Category: Research
World AIDS Day (12/1/08) – Embracing the Positive
World AIDS Day is a milestone in so many different ways. It has marked the persistence of HIV and its impact on our world, but we hope that we are approaching a turning point where World AIDS Day will come to mark progress. What this day marks, however, is that being HIV positive doesn’t… Continue reading World AIDS Day (12/1/08) – Embracing the Positive
National Family History Day
PatientsLikeMe believes in the benefits of openly sharing health information. That is why we are happy to spread the word about National Family History Day, which had its fifth anniversary on Thanksgiving 2008. As families gather this holiday weekend, National Family History Day encourages families to become familiar with the health history of previous generations. … Continue reading National Family History Day
PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases
PatientsLikeMe recently released a new PatientsLikeMeListen™ report: “Did the July 2008 PML announcement affect the Tysabri brand?” Among our findings, the report reveals that MS patients retained an overall positive perception of the Tysabri brand despite the July 2008 announcement of two additional PML cases. When we originally covered this topic back in August, the… Continue reading PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases
PatientsLikeMe honored with award of distinction at Ars Electronica
Ars Electronica – one of the foremost centers for art and technology – honored PatientsLikeMe at their annual festival with the Award of Distinction. The Prix Ars Electronica is one of the most prestigious prizes in the fields of media, technology, animation, and interactive art. This year, there were a record number of submissions with… Continue reading PatientsLikeMe honored with award of distinction at Ars Electronica
How representative are PatientsLikeMe patients to the general population?
Mimi Yin over at The Common Data Project blog posed some interesting questions about data in our communities: Back in April, I wrote about the site PatientsLikeMe.com, which provides a wonderful new service that allows individual users to share the most intimate details of their medical conditions and treatments, which in turn creates a pool… Continue reading How representative are PatientsLikeMe patients to the general population?
Bringing you Medicine 2.0
Last week, PatientsLikeMe presented a keynote address at the inaugural Medicine 2.0 Congress in Toronto, Canada in front of 200 researchers from 20 countries. A new, annual international conference on Web 2.0 (social web) applications in health and medicine, this year’s event was centered around the theme: “Building Virtual Communities and Social Networking Applications for… Continue reading Bringing you Medicine 2.0
PatientsLikeMe Announces Enhanced Treatment Reporting
Treatment reporting is a critical part of PatientsLikeMe. Sharing your information lets others see what treatments you’ve tried…and how well they’ve worked. It also gives you a precise record over time to show your doctors. We’ve had several requests to enhance our treatment reporting tools, and well, we listened. Our top-to-bottom treatment overhaul is officially… Continue reading PatientsLikeMe Announces Enhanced Treatment Reporting
More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease
Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70’s and 80’s. However, about… Continue reading More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease
PatientsLikeMe at the Young-Onset Parkinson’s Network Conference
PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week. The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and… Continue reading PatientsLikeMe at the Young-Onset Parkinson’s Network Conference