Patients Like Me; share group

PatientsLikeMe is a health information sharing website for patients. Only here do patients like you have the opportunity to share both personal stories and health data about your conditions to help uncover great ideas and new knowledge.

By sharing information on our site, you can put your disease experiences in context and find answers to the questions you have. You can:

know detailed information about every medication, supplement, or device used to treat patients like you and learn about what works;

connect easily with patients that have the same conditions, experiencing the same symptoms or using similar treatments; and

learn from patients like you.

Imagine partnering in real time with doctors, researchers and companies to improve the understanding of your disease and accelerate the development of new treatments? This is what is at the heart of the PatientsLikeMe vision– the kind of information sharing that will impact the lives of patients like you and transform healthcare by putting patients back at the center of the system.

patientslikeme.com

[Erniediaz1018]

Great find Roy. Thanks for sharing. Will be looking into it some more. I like it so far.

[ParlePark]

I don’t know anything about this. But checked out reviews and came across this article. Think it’s worth reading and checking out prior to signing up.

cbsnews.com/news/patientsli...

[Hidden in reply to ParlePark]

Old news but good to know. I think most sites monetize in some way.

[ParlePark in reply to Hidden]

Checked a few more reviews/competitors/etc. and agreed. Something to be considered for sure.

[Hidden in reply to ParlePark]

Hi Roy,

Yes, we do sell patient information. We create partnerships between our members and the companies that are developing products to help our members. The personally identifiable information you share upon joining the site (like your name or contact information) is considered restricted and therefore not shared with partners. The data and text you enter in and around the shared parts of the site (e.g., on your profile, in the forum, symptom or treatment reports) may be shared or sold in aggregate to partners. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.

We think that by selling this data and engaging our partners in conversations about patient needs, we're helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients. So we do sell data, but think it’s a good thing. Every partnership we develop must bring us closer to aligning patient and industry interests. Our end goal is improved patient care and quality of life. We can appreciate this may not be the community for you – or for others – but I wanted to make sure you understand our business model and our intention. Please don’t hesitate to reach out with any other questions or comments.

Warmly,

PatientsLikeMe

[ParlePark in reply to Hidden]

Nice they responded and thanks for the update. “Considered restricted “. I as many want to help our community but very concerned about privacy. Something that should be considered for many different reasons. Thanks for the follow up.

[felixned]

I actually participate in this forum. They send phlebotomist every 3 months but they never share what they test. I asked them to share the results like CBC and /or metabolic panel which would be useful to monitor general health but they would not have it. They offer place where you can display test results you get from your doctor. They also ask you to fill out the questionnaire to track your Parkinson. They send you some gadgets as gratitude for the trouble. I view it as an opportunity to get better treatment for pd. Healthunlocked is by far more informative.

[Hidden in reply to felixned]

Also informative facebook.com/groups/2322600... …

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