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: HIV/AIDS
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
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
Learning from Others: Newsletter Highlights 2011
In the spirit of the New Year, here are some highlights from our recent newsletter. Read what patients like you have to say about what they’re most interested in learning from other patients this year. * * * (Amy) What are you most interested in learning from other patients this year? (bradley25 – Mood Conditions… Continue reading Learning from Others: Newsletter Highlights 2011
Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)
2010 was a strong year for business development at PatientsLikeMe. Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two. Here are a few of our successes and challenges over the year. Successes 1. New Partnerships, New Communities In the first… Continue reading Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)
Rising Together: A PatientsLikeMe Year in Review (Part VI: Nonprofit Partnerships)
Why does it feel like “second nature” for PatientsLikeMe to create innovative partnerships with nonprofits? Nonprofit organizations are dedicated and centered around putting patients first – a concept that’s near and dear to us too. In 2010, we focused on refining our nonprofit partnerships to bring more events and programs to patients, both online and… Continue reading Rising Together: A PatientsLikeMe Year in Review (Part VI: Nonprofit Partnerships)