RECOVER takes your privacy very seriously. Strong rules are in place to protect your information and limit who can see or use it.
Your Information is Protected by Law
Your study and health information are protected by federal and state laws, including HIPAA (the Health Insurance Portability and Accountability Act). HIPAA is a law that helps protect your health information by limiting how it can be used, shared, and stored.
How Your Information is Stored
Your study information is stored in secure systems. Paper records with personally identifiable information (PII) are kept in locked locations, and electronic information is protected with passwords and encryption. PII includes things that could identify someone, like their name and contact information. Only authorized study staff can access this information.
How Your Information is Used
RECOVER shares data in three different ways. The first way is through published papers. These show how RECOVER researchers used participant data to learn more about Long COVID. The data that researchers study for published papers are de-identified, meaning that it does not contain participants’ PII. Anyone can refer to these papers in their own work.
The second way that data are shared is through a special program called the NHLBI BioData Catalyst® (NHLBI BDC), a secure system managed by the National Heart, Lung, and Blood Institute (NHLBI). The information in the NHLBI BDC is grouped together (combined, not about one person) and gives a big picture view of the data RECOVER is studying. This RECOVER data is also de-identified and open to the public.
The third way data are shared is through controlled access. This means that the data are more detailed and only available to researchers who request permission to use it. Requests are reviewed in a thorough, multi-step process.
Sharing data this way helps researchers learn more about Long COVID and apply what they find in future studies. For more details about how data are shared and accessed, see Accessing RECOVER Data .
Who Watches Over RECOVER Data
Several groups work together to protect your information and make sure RECOVER follows the rules:
- Study staff – The people who run the study day to day. They are responsible for collecting information correctly and reporting any unexpected problems.
- Ethics review boards (also called an Institutional Review Board, or IRB) – Independent groups that review the study and watch over it to protect the rights, safety, and well-being of study participants.
- NIH and other government agencies – Federal research agencies that oversee the study, review reports, and make sure laws, policies, and study rules are followed.
- Central data team – The team that takes care of study data and makes sure information from different study sites is collected the same way, kept accurate, and stored safely.
- Quality review teams – Groups that regularly check study sites and procedures. They may review study sites to make sure the study is being run correctly.
Together, these groups help ensure your information is used only for approved research purposes and is handled responsibly. These groups regularly review the study and can take action if rules are not followed, including stopping data access.
Extra Protection from the NIH
NIH and RECOVER follow all federal, state, and local laws and regulations for protecting participants’ personal information. RECOVER also has a Certificate of Confidentiality (CoC) from the US government. This adds extra privacy protection. The certificate means that:
- Researchers cannot be forced to share information that could identify you, even by a court order.
- There are very few times when your personal information would have to be shared outside the study, as required by law. These include when harm or abuse needs to be reported.
- You can always choose to share your own information if you wish.
Our Commitment to Your Privacy
We are committed to protecting the personal and health information of RECOVER participants. Strong protections and oversight help ensure information is used responsibly and only for approved purposes.