Openness

The Smart List (Forget Medical Privacy) and The Future of Healthcare

4 Comments / Patient Experiences / By

Check out the October issue of WIRED magazine!  PatientsLikeMe makes “The Smart List:  12 Shocking Ideas That Will Change the World.”  In an interview with Brendan Koerner (“Forget Medical Privacy“), Co-founder Jamie Heywood talks about how “the lack of openness [in medicine] is making us sicker” and how sharing individual health data can benefit you.  […]

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Patients like me declare our health data rights

2 Comments / Patient Experiences, Research / By

“We the people…have the right to our own health data.” That’s part of a collective new Declaration of Health Rights, officially unveiled tonight on the newly launched HealthDataRights.org. It is time to turn the conversation from fear and privacy to sharing data and finding new treatments and better care. The Declaration represents reality that what

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Sharing Is A Right As Well

10 Comments / ALS, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV,

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Introducing “The Patient Voice” – First up? Inpatient Therapy

2 Comments / Mental Health, Patient Experiences / By

Today’s patient has a loud and strong voice.  At PatientsLikeMe, we hear you.  You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.” With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that

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Structuring and Presenting the Patients’ Perspective at AMIA

13 Comments / ALS, Patient Experiences, Rare Diseases, Research / By

PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one. Earlier this fall, the venue for this conversation was the annual

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