“Social media is the canvas on which patients can really paint the entire picture of the experience they’re having with their disease and how it impacts their lives.” – David Williams Why is it so important for patients and industry to work together? Chief Marketing Officer and Head of Business Development David Williams tells us… Continue reading PatientsLikeMeOnCall™: “A Look Ahead” at Patient and Industry Interaction (Episode 2)
Category: Organ Transplants
One for All: The Road Ahead with PatientsLikeMeInMotion™
This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you! Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise… Continue reading One for All: The Road Ahead with PatientsLikeMeInMotion™
PatientsLikeMeOnCall™: “A Look Ahead” at Research (Episode 1)
Since 2006, PatientsLikeMe has made great strides in medical research for patients. Of course, all of the research that we do is made possible because of you, our members, and your willingness to openly share your health information, including your treatments, symptoms and outcomes. PatientsLikeMe-led research has been published in at least six different scientific… Continue reading PatientsLikeMeOnCall™: “A Look Ahead” at Research (Episode 1)
Look Ahead with PatientsLikeMeOnCall™
PatientsLikeMeOnCall™ is proud to present a new podcast series called “A Look Ahead.” Through these dynamic podcasts, we will be diving into the major shifts PatientsLikeMe sees ahead for patients, patient care and patient/industry collaboration. At the end of 2010, PatientsLikeMeOnCall released an episode called “The Patient Rules.” In this group podcast, we sat down with… Continue reading Look Ahead with PatientsLikeMeOnCall™
One for All: Ways You Can Share, Find and Learn at PatientsLikeMe
When patients join our site, a common question we get is, “Now that I’ve signed up, what can I do here?” One answer is that you can chart the real-world course of your disease and compare it against other patients. But that sounds a little complex, doesn’t it? If we break it down into simpler… Continue reading One for All: Ways You Can Share, Find and Learn at PatientsLikeMe
Share and Compare: What Have You Learned with InstantMe?
How are you feeling today – honestly? In December, PatientsLikeMe launched a new feature called InstantMe. It’s designed to allow you to chart how you are feeling day in and day out. Is today a bad day? Record it on InstantMe (found on your profile), and if you’d like, add a note explaining what’s going… Continue reading Share and Compare: What Have You Learned with InstantMe?
Patient Choices: How Open Are You Now?
At PatientsLikeMe, we have a Privacy Policy that explains what we do with the health data that patients like you share. But as many of you know, we also have an Openness Philosophy, which outlines what we believe are the substantial benefits of being open versus private about your condition. Here’s an excerpt: “Currently, most… Continue reading Patient Choices: How Open Are You Now?
Patient Choices: The Shape of Sharing
In these days of Facebook and Twitter, the media is abuzz with news of “over sharing” of sensitive, personal or trivial information – everything from your current location to what you were up to over the weekend. Members on our site may choose to share some of this, but what about some of the less… Continue reading Patient Choices: The Shape of Sharing
The Social and Emotional Choices You Make Every Day as a Patient
As David Williams discussed in his blog on Monday, we all have to make choices. And for patients like you living with serious medical conditions, there are obvious treatment and career decisions that you have to make—finding the right doctor, deciding which treatment options to try and determining if it’s still possible for you to… Continue reading The Social and Emotional Choices You Make Every Day as a Patient
The Choices Patients Like You – and Like My Mother – Face
Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake. I have watched my… Continue reading The Choices Patients Like You – and Like My Mother – Face