Last Friday (September 26, 2008), our Co-founder and President, Ben Heywood, was honored at the Boston Business Journal “Champions in Healthcare” award ceremony. Ben was one of two recipients recognized in the Innovation category. These regional awards highlight outstanding individuals and companies from the Boston-area who are making a difference in healthcare, including winners across… Continue reading Ben Heywood, PatientsLikeMe Wins Boston Business Journal’s “Champions in Healthcare” Award
Category: Patient Experiences
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?
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 Announces New Partnerships
At PatientsLikeMe, our Core Values drive all of our business processes including selection of partners. We are proud to announce our three newest partnerships which include both nonprofit and academic institutions. Note: At all times, our members can access information about what we do with their data, how we make money, and who is partnering… Continue reading PatientsLikeMe Announces New Partnerships
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
Genetic Discrimination: The End Before the Beginning
Updated: The Genetic Information Nondiscrimination Act (GINA) was signed into law by President Bush on May 21, 2008. In a victory for openness and personalized medicine, on May 1, Congress sent President Bush a bill forbidding employers and health insurers from discriminating on the basis of genetic information. The Genetic Information Nondiscrimination Act was passed… Continue reading Genetic Discrimination: The End Before the Beginning
Let’s make clinical trials more rewarding for patients
I came across this Wall Street Journal article earlier this week which details how patients with life-changing illnesses are using online services such as EmergingMed to help them enroll in clinical trials. The article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor. They… Continue reading Let’s make clinical trials more rewarding for patients
The Power of “Light Touch” Moderation
Members of PatientsLikeMe interact a number of ways: viewing profiles, reading treatment and symptom reports, and posts in our forums. In contrast to many of the most heated arguments on the internet (politics, religion, Star Trek…), the discussions on PatientsLikeMe have a tangible impact on people’s lives. Patients with a chronic condition often spend… Continue reading The Power of “Light Touch” Moderation
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