Structuring and Presenting the Patients’ Perspective at AMIA

13 Comments / ALS, Patient Experiences, Rare Diseases, Research / By

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 […]

Structuring and Presenting the Patients’ Perspective at AMIA Read More »

Voices of Fibromyalgia: Q&A with Minnie Lee

3 Comments / Fibromyalgia, Patient Experiences / By

PatientsLikeMe’s David S. Williams sits down with well-known blogger, triathlete and fibromyalgia patient, Minnie Lee.   Lee, an early member of our new fibromylagia community which launched this week, has a public profile on the site. *** (David) When were you diagnosed with fibromyalgia and when were your first symptoms? (Minnie) I was diagnosed in late

Voices of Fibromyalgia: Q&A with Minnie Lee Read More »

CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday

5 Comments / ALS, Fibromyalgia / By

It’s exciting times for PatientsLikeMe! Today, our new community for people with fibromyalgia goes live on our site.  Spread the word!  Let’s bring a new level of understanding to this disease in a way that nobody else can.  Next week: a blog series regarding this new community and the people in it. If you haven’t

CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday Read More »

National Family History Day

ALS, Multiple Sclerosis, Parkinson's Disease, Research / By

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. 

National Family History Day Read More »

PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases

14 Comments / Patient Experiences, Research / By

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

PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases Read More »

Should You Share Your Health Information Online?

13 Comments / Multiple Sclerosis, Patient Experiences / By

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 »

Ben Heywood, PatientsLikeMe Wins Boston Business Journal’s “Champions in Healthcare” Award

Patient Experiences / By

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

Ben Heywood, PatientsLikeMe Wins Boston Business Journal’s “Champions in Healthcare” Award Read More »

Scroll to Top