Every December 1st, we join hands with the HIV community at large in recognition of World AIDS Day. The theme of World AIDS Day this year is leadership — a fitting theme for the 2500+ patients who are leading the way through openness in the PatientsLikeMe HIV community. These leaders have chosen to share their… Continue reading PatientsLikeMe Facing World AIDS Day 2009
Bil:Pil Conference Presentation on PatientsLikeMe
A few weeks ago, I gave a 30-minute talk about PatientsLikeMe at Bil:Pil, the unconference following TEDMED in San Diego (where Jamie Heywood made an amazing presentation, by the way). The topic of my presentation was “A Healthy Mix with an Economic Twist.” I focused on how difficult it can be to make money in… Continue reading Bil:Pil Conference Presentation on PatientsLikeMe
Sharing, Openness…and Privacy?
Every so often, we sit down to try and make our business objectives clearer to our patient communities. Why? Well, we can’t have a business without you and our communities can’t exist to help patients without a business. This often results in our Privacy Policy and User Agreement being updated to help clarify our goals… Continue reading Sharing, Openness…and Privacy?
Redesigned Treatment Reports on PatientsLikeMe
One thing that’s great about working at PatientsLikeMe is that our members are really invested in making our product better. Every day, we receive lots of great recommendations about how to improve the site. Today, we’re unveiling newly redesigned treatment reports that incorporate feedback we’ve received in all our communities. Want to know what medications… Continue reading Redesigned Treatment Reports on PatientsLikeMe
Research Award: Patients Informing Practice
Earlier this Fall at Medicine 2.0, PatientsLikeMe was honored to receive the inaugural Journal of Medical Internet Research (JMIR) Award for our paper on what we can learn about drugs post market from patients reporting treatment experiences on PatientsLikeMe. Once a drug is on the market, it can be difficult to evaluate how it’s working… Continue reading Research Award: Patients Informing Practice
PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
PatientsLikeMe made the following announcement last night at the TEDMED conference. For more on Jamie Heywood’s presentation, check out what people are saying on Twitter. – – – – – – – PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROME Researchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus Cambridge,… Continue reading PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
The Smart List (Forget Medical Privacy) and The Future of Healthcare
Check out the October issue of WIRED magazine! PatientsLikeMe makes “The Smart List: 12 Shocking Ideas That Will Change the World.” In an interview with Brendan Koerner (“Forget Medical Privacy“), Co-founder Jamie Heywood talks about how “the lack of openness [in medicine] is making us sicker” and how sharing individual health data can benefit you. … Continue reading The Smart List (Forget Medical Privacy) and The Future of Healthcare
Harnessing “New Media” for Patient Advocacy
The media is abuzz at the moment with stories about social networks like Facebook and Twitter, carrying pieces on the good (Facebook Fan Page raises $10,000 for a Silicon Valley Food Bank), the bad (Facebook users are leaving out of mistrust and boredom), and the controversial (Social networking site for living organ donors). In the… Continue reading Harnessing “New Media” for Patient Advocacy
The Patient Voice – Loud and Clear
We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient. In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members. … Continue reading The Patient Voice – Loud and Clear
New Parkinson’s Genetics Engine to Enhance Research Through Shared Data
Though documented as long ago as the early 1800s, medical breakthroughs in Parkinson’s disease research have been slow in coming. That’s why PatientsLikeMe continues to get involved in the research process. With our new genetics engine for Parkinson’s disease, patients now have a way to share information about their genetics and find others with the… Continue reading New Parkinson’s Genetics Engine to Enhance Research Through Shared Data