Is sharing data on PatientsLikeMe safe?

When sharing information online about your health or a specific condition, you should know there is always a risk that someone could use this information against you. For example, medical and life insurance companies have clauses that exclude pre-existing conditions or employers may not want to employ someone with a high-cost or high-risk disease. We know these risks are real.

We also believe that openly sharing information (see our Openness Philosophy) is an important way to improve medical care. Ultimately, you decide how to balance these risks. When you provide your name and email upon joining the site, we treat that as “restricted” (or unshared) data (see our Privacy Policy). However, you control what information you enter and, therefore, share everywhere else on the site. The more personal information you share on our site (e.g., photos, location, birthday or other personal information which is optional to add in your profile), the more risk there is that someone can identify you. 

As for sharing health information, we believe the more health information you share, the closer we get to improving our health system and advancing the knowledge of your conditions. So, all we can ask is that you participate as fully as you feel comfortable doing.

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