• 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.

• What is Openness and what about Privacy?

  We believe privacy has hindered the effective development of new treatments and shared understanding of how to manage disease. We’re embracing a new model founded on the belief that openness is a good thing. Please read our Openness Philosophy because it explains how we believe openness can save lives and improve care for everyone.  It is at the core of who we are as a company.  
  
  Understanding privacy is important too.  Our website can only work if we build trust with you, our patient members.  Without the trust of our members, we would not be able to accomplish our mission to improve healthcare. Privacy is also a legal term and we have worked hard to develop a good policy. Like everything that is legal, the policy is long and has fine print, but we continually update it so it’s easy to read and understand.

• Does PatientsLikeMe sell my information?

  Yes, we do.  We create partnerships between you, our patients, and the companies that are developing products to help you. To do that, we take the information you entrust to us and sell it to the companies that can use that data to improve or understand products or the disease market. 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. 

  
  We also provide a voluntary opt-in service to allow partners to directly communicate with patient members through our system.
  
  To learn more, see how we make money or read details on what is shared and sold in our Privacy Policy.

Need more help? Email support@patientslikeme.com