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 […]
Sharing, Openness…and Privacy? Read More »
Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience. Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization. Here’s what she
The Patient Voice: Interview with Mountabora (Mood Conditions Community) Read More »
Did you know that yesterday was Fibromyalgia Awareness Day? The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch! Many of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread
Fibromyalgia Awareness Day 2009 Read More »
PatientsLikeMe was once again a proud sponsor of the 15th Annual Parkinson’s Unity Walk, held in New York City on Saturday April 25, 2009. On a gorgeous but hot day in Central Park, Jeana Frost, James Kebinger and I (Maureen Oakes) joined thousands of walkers and sponsors in raising more than $1.2 million for Parkinson’s
PatientsLikeMe at 2009 Parkinson’s Unity Walk Read More »
This month marks the 3-year anniversary of our flagship ALS community. While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease. Today, we’re announcing the launch of our Genetics Search Engine for people with ALS. Imagine finding other patients just
Announcing the PatientsLikeMe ALS Genetics Search Engine Read More »
A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder. It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine. Since then, more than 8,700 patients have joined the community, sharing detailed information about
Happy 1st Anniversary Mood Community! Read More »
In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS,
A new gene for ALS: What sharing your genetics could mean for research Read More »
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 »
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 »
You’ve spotted us again! This weekend, PatientsLikeMe was a proud sponsor of the AIDS Walk/Run at Grant Park in Chicago on September 20, 2008. The event, benefiting the AIDS Foundation of Chicago and 70 other local organizations, brought together more than 7,000 people on this warm, sunny day to show their support in the fight
Living Positive with PatientsLikeMe (AIDS Walk Chicago) Read More »
