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?
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
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
One for All: A Building of Hope
As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient. Today, we have a very special interview with one of our earliest members with ALS, SmoothS. We sat down with SmoothS to talk about his recent building of the first ever… Continue reading One for All: A Building of Hope
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
Treat us right: Comparing Cymbalta and Lyrica in the fibromyalgia community
At PatientsLikeMe, we strive to put the interests of you, the patient, first in everything we do. After all, you are the customers of the healthcare industry, and you deserve to have a say about the products and services created for you. Unfortunately, your needs and opinions often haven’t had the influence on the decision-making… Continue reading Treat us right: Comparing Cymbalta and Lyrica in the fibromyalgia community
Share and Compare: The Launch of Two Medications
The launch of a new medication can be a very exciting event. It can renew hope for a better future and provide proof of the billions spent on research every year. It can also stimulate a lot of interesting conversation. Or not. We’ve learned from you that not every new medication warrants your attention and… Continue reading Share and Compare: The Launch of Two Medications
One for All: A Cross View of Patient Sharing
With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another. Last month, we highlighted how your sharing affects the experience of many on our site (One For All series). Today, we continue that theme by taking a look at information being shared across all of our communities that… Continue reading One for All: A Cross View of Patient Sharing
How Patients Like You Use Your Treatments in the Real World (Cont’d)
Here is our second blog about the two recent studies published in the Journal of Medical Internet Research (JMIR) about how patients like you are actually using your treatments. Study Two: Treatment Adherence Barriers Your doctor has likely told you that it’s best to take your medication as prescribed. But in the real world, there… Continue reading How Patients Like You Use Your Treatments in the Real World (Cont’d)
How Patients Like You Use Your Treatments in the Real World: Two New Studies
Ever wonder how many patients like you are using drugs off-label? Or how hard is it to take MS medications as prescribed? You’re about to find out. In January, the PatientsLikeMe R&D team published not one but two studies in the Journal of Medical Internet Research (JMIR) in an effort to provide answers about how… Continue reading How Patients Like You Use Your Treatments in the Real World: Two New Studies