“I think we can see there are a lot of ways where openness can be powerful. What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this …
PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4) Read More »
Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics, scraped our forum last Spring. (See my previous blog post on the incident – “Transparency, Openness and Privacy”) Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more. …
PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d) Read More »
Share your thoughts in an innovative online event with our partner Myelin Repair Foundation. Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system. In this same …
The following message was sent this morning to all members of PatientsLikeMe. Please read what we have to say about openness, sharing and its privacy implications and join the conversation. **** Dear PatientsLikeMe Members, What are the privacy implications of sharing in this open, online community? We talk a lot about this and, as a …
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 …
Over the past seven months of working at PatientsLikeMe, I’ve come to think that the idea of sharing medical and health information is completely normal. Since giving birth to my nearly 3 year old daughter, I have continued to be eternally grateful to other mothers who have willingly and openly shared their deeply personal experiences …
Welcome to the PatientsLikeMe blog. Here you will get firsthand accounts of our growth and how we are impacting global health care. Why have we chose the name “The Value of Openness”? Read our Openness Philosophy below, and you’ll see why. ________________________ Openness is a good thing. Most healthcare websites have a Privacy Policy. Naturally, …
Your chronic health condition may steal your energy, but it shouldn’t rob you of family fun. Jeanette Alston-Watkins was diagnosed with lupus (SLE) when her kids were 11 and 14. Check out this Q&A about activities she enjoyed with them despite SLE. Try some of these with your children or grandchildren over the upcoming holiday …
Gait freezing and falls are common among people with Parkinson’s disease (PD). Take a closer look at patients’ experiences, common triggers of freezing and tips that may help prevent falls. What is known about freezing and falls? Researchers and movement experts have been studying gait freezing in people with PD for several decades. The exact …
Parkinson’s Freezing Triggers and Fall Prevention Read More »
Ready to cast your ballot? Election Day is almost here and recent polls show that healthcare is one of the top issues on voters’ minds. Here’s some quick election-related info for you. Election Day and voting basics – Tomorrow (November 6, 2018) is a general election for most states, except Louisiana (where November 6 is a primary and December 8 …
Healthcare = hot election topic. Check out some Election Day basics Read More »
