PatientsLikeMe ™

Is sharing data on PatientsLikeMe safe?

When sharing information about an illness or disease in any community, there is always a risk that someone could use this information against you.  Medical and life insurance companies have clauses that exclude pre-existing conditions.  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 the only way to improve medical care.  Ultimately, it is your decision to make about how to balance these risks. We do not display your name or email address and you control what information you enter and, therefore, share.  The more personal information you share (e.g., photos, personal information in your profile) on our site, the more risk there is that someone can identify you.  The more information patients share, the more valuable that information is to everyone.  So, all we can ask is that you participate as fully as you feel safe 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 our patient communities.  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.  You should read it.

Does PatientsLikeMe sell my information?

Our goal is to create partnerships between patients and the companies that are developing products to help them. To do that we will take the information you entrust to us and sell it--in an anonymous, aggregated and individual format--to the companies that can use that data to improve or understand products or the disease market. We will not sell your personally identifiable information (like your name or contact information) for marketing purposes or without your expressed permission.

In the future, we may offer a service to our patients that could allow our partners to directly and anonymously communicate with them through PatientsLikeMe.

To learn more, see how we make money.