What options do I have to control my data or close my account on PatientsLikeMe?

 Since a main goal of our site is to use non-identifiable data for research, we highly encourage members to stay on our site, even if they don’t interact with it often. This way we can use the data for current and future research.

• You can keep your data on the site for future research, but not get contacted
  • Update your email preferences, or we can do that for you - your data will still contribute to research, but you don’t have to maintain your account.

• You can delete some data, but keep your account
  • If you still want to stay on the site to keep in contact with others and browse the community information, you can delete your own data and keep an active profile. If you’re unsure how to do this, you can check out our general FAQs or email support@patientslikeme.com for any assistance. 

• You can close your account
  • Your account information and data will no longer be displayed on the site. We will keep your reported data and profile on the site’s servers, but not visible to the public — so you can re-open your profile in the future if you want to. To do this, please send a request via our 'contact us' page. 

• You can delete your account
  • The profile that’s associated with your data on the site will be permanently deleted on our back end. In the interest of full transparency, our Privacy Policy and Article 89 of the GDPR allows us to keep archives of data that has been used in scientific research. This is vital because such research requires the ability to reproduce results and respond to questions and concerns about the results – especially during the peer review process. Any of your data which has been used in research before we deleted your account will be kept archived. This data is kept separate from our active database, so it will not be accessible on the site or used for future research.