PatientsLikeMe and The Power of Peers

Over the weekend, PatientsLikeMe was an exhibitor at the Depression and Bipolar Support Alliance’s 2008 National Conference, which took place September 11-14th in Norfolk, Virginia.  The theme was “The Power of Peers.” While I spent most of my time at our sponsor table answering questions about PatientsLikeMe, I overheard other attendees discussing a concept I… Continue reading PatientsLikeMe and The Power of Peers

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

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

PatientsLikeMe Facebook Page

Are you on Facebook? We are! Simply search for “PatientsLikeMe” to find our new company page. Once there, click “Become A Fan,” and a “My Pages” link will be added to your profile. Remember, Facebook is an open platform that anyone can view and isn’t part of PatientsLikeMe. Therefore, any information you share about you… Continue reading PatientsLikeMe Facebook Page

What can happen when patients have access to one another’s data

There is growing interest in and demand for access to personal health information and tools to review and discuss this information. But why? What do patients get from reviewing health information? More research is needed to know the answer.To examine this question and understand what value users get from one another’s information, Michael Massagli and… Continue reading What can happen when patients have access to one another’s data

Wikinomics Blog Praises PatientsLikeMe Business Model

Yesterday Naumi Haque of the Wikinomics Blog referenced PatientsLikeMe as part of a bold prophecy regarding viable business models for social networking companies, particularly Facebook. First, we are honored that Wikinomics found our business model compelling given our decision to forgo an advertising-based revenue stream at this time. While Facebook is a pure-play social network… Continue reading Wikinomics Blog Praises PatientsLikeMe Business Model

PatientsLikeMe at the Parkinson’s Unity Walk

PatientsLikeMe was a proud sponsor of the 14th Annual Parkinson’s Unity Walk in New York City this past Saturday (April 26, 2008). Jeff Cole, Kate Brigham, Maureen Oakes and I (Lori Scanlon) were all onsite working at our sponsored booth. The event, which raised more than $1.3 million in donations this year, brought together thousands… Continue reading PatientsLikeMe at the Parkinson’s Unity Walk

ALS Patients: Give us the truth about cognitive change

One of the things we’re most proud of at PatientsLikeMe is our ability to rapidly carry out research. There are some obvious benefits online: patients can can take part whenever they want, take as much time as they need (often using assistive technology), and are more likely to be open and honest about subjects that… Continue reading ALS Patients: Give us the truth about cognitive change

HIV: The Story is Far From Over

Recently, PatientsLikeMe opened a community for people affected by HIV, our first outside the area of neurological diseases. Since then, we’ve gained some 700 patients in the community, including a member who goes by the name of “BrightonBear.” His experiences are quite unique as he’s been living with HIV for more than 25 years and… Continue reading HIV: The Story is Far From Over