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
Category: Patient Experiences
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
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
Charting the course of PLS and PMA
Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Normally, ALS affects the upper motor neurons in the brain and spinal cord, as well as the lower motor neurons that send signals from the spinal cord directly to muscles. PLS and PMA are different because PLS only… Continue reading Charting the course of PLS and PMA
It’s National HIV Testing Day
Today – June 27, 2009 – is National HIV Testing Day. AIDS.gov, the one-stop access to U.S. Government HIV/AIDS information and an organization PatientsLikeMe collaborates with to raise awareness of HIV, has been running a campaign all month to promote National HIV Testing Day. As part of the campaign, AIDS.gov launched the “I Know. I… Continue reading It’s National HIV Testing Day
Patients like me declare our health data rights
“We the people…have the right to our own health data.” That’s part of a collective new Declaration of Health Rights, officially unveiled tonight on the newly launched HealthDataRights.org. It is time to turn the conversation from fear and privacy to sharing data and finding new treatments and better care. The Declaration represents reality that what… Continue reading Patients like me declare our health data rights
PatientsLikeMe on Fox Business Live
Ben Heywood is speaking at The National Summit in Detroit today, and was invited on Fox Business Live to talk about the patient influence on the future of health care. Here is the segment with anchor Alexis Glick.
UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research
Today is an exciting day for PatientsLikeMe. In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research. The news release announcing the partnership is below. ****** BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire –… Continue reading UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research