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 mean …
World AIDS Day (12/1/08) – Embracing the Positive Read More »
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 …
Openness. Privacy. These philosophies stand in direct opposition in the question of which is better for consumer health. Should people be open with their health information or private? Certainly there are times for both, right? Not according to some privacy advocates. On October 22, 2008, Deven McGraw from the Center for Democracy and Technology cited …
Should You Share Your Health Information Online? Read More »
A few nights ago, I was honored to give a keynote at the second Health 2.0 Northeast conference held right here in our Cambridge, MA backyard. It’s exciting to see old friends and new emerging start-ups coming together to try and make a dent in the $2 trillion industry that is healthcare in the U.S. …
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 …
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 …
How representative are PatientsLikeMe patients to the general population? Read More »
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 …
More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease Read More »
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 …
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 …
What can happen when patients have access to one another’s data Read More »
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 …
Genetic Discrimination: The End Before the Beginning Read More »
