Data linking and privacy: Frequently asked questions

PatientsLikeMe (PLM) can link your health data from your care providers and connected health devices/apps. Having your health data all in one place will provide insights that can help improve your health. It will also automate and personalize many PLM features for you. You decide how and with whom you'd like to share your data. 

How is this information used? 

You can use PatientsLikeMe to track all of your health data in one place, so you can focus on the big picture. PatientsLikeMe will use your data to personalize your site experience and provide greater insights that enable you to take charge of your health. Our Privacy Policy explains how your data is used and shared with Partners. 

What do I need to know? 

If you consent to import data from external sources, a copy of that data will be available in your PatientsLikeMe account. No data will be sent from PatientsLikeMe to your health care providers or to your devices or apps. If you edit or delete any of the information once it has been added to your PatientsLikeMe account, it will not affect the data held by those other sources. If you need to have data held by one of your health care providers modified, you must contact them with that request. 

You can choose to share your health data with other PatientsLikeMe Members or to keep it personal to just your account. You can manage your privacy settings on your Account page at: https://www.patientslikeme.com/account/privacy    

PatientsLikeMe Researchers will be able to view the data in your account in order to provide greater insights to you and the broader PatientsLikeMe Community. 

Our Partners may also have access to your health data in a way that does not identify you, to support research that improves the patient experience. 

For more, see the full PatientsLikeMe.com Privacy Policy. 

What happens if I no longer want my data on PLM? 

You have full control over your health data on PatientsLikeMe and can modify or delete any and all of the information stored on your PatientsLikeMe account. You can do that using the Manage Account page: https://www.patientslikeme.com/account/manage

You can also remove the data connection to your Electronic Health Records and your other health devices without removing the data you previously imported. You can manage your third-party data connections on the Manage Account page: https://www.patientslikeme.com/oneuphealth  

Is my information safe? 

PatientsLikeMe takes commercially reasonable technical precautions to help keep Member data secure, consistent with applicable EU, UK, and US laws. 

Is my data covered by HIPAA after it’s imported? 

No, the data you import to PatientsLikeMe is not covered by HIPAA. Your data will be protected by PatientLikeMe’s Privacy Policy and Terms of Use Agreement. Please note, importing your data to PatientsLikeMe has no effect on your health records that are managed by your provider. 

Questions? Please contact us  and we'd be happy to help.