When to Share or When Not to Share, that is the Privacy Question

Looking for a grant award you heard about? Go here! Perhaps how many trainees NIH supported? You got it! Research spending on a certain disease? Done! Comparing NIH to another federal funder? Look no further! As you can see, NIH shares a quite diverse array of data associated with our funded grants in a transparent way. But, that does not mean we share everything.

We take the privacy and protection of your sensitive and personally identifiable information very seriously.  And with the just-released “Final Rule,” as explained below, we are now able to better safeguard the privacy of the extramural application process, including work products resulting from peer review.

NIH grants information is stored in the online official records system known as electronic Research Administration (eRA). People identified on applications and grants, like principal investigators, project staff, and NRSA trainees, must create a profile in the eRA Commons. The profiles can include a user’s name, date of birth, employment history, race, ethnicity, and sex. Employing appropriate security practices, eRA stores this information together with records generated from submitted applications and funded awards, to provide authorized Federal staff and contractors whose official duties require the use of this information a complete and accurate view of NIH’s supported research.

Like other Federal agencies, NIH has developed practices based on Federal privacy laws that inform whether information on individuals collected by Federal systems can be released. For information on NIH applications and grant awards, this is spelled out in the System of Records Notice #09-25-0225, NIH Electronic Research Administration (eRA) Records (NIH eRA Records), that was published in the Federal Register. This notice covers records generated during the application process, peer review, award processing, post-award monitoring, and closeout—in other words, the entire NIH research, training, and development award lifecycle. The notice describes the circumstances under which the records may be disclosed outside of NIH. It also explains relevant legal authorities, record types and sources, as well as how the records are safeguarded, stored, retrieved, accessed, exempted, amended, retained, and disposed.

The “Final Rule,” posted a few months ago, covers records used in managing NIH research and development applications and awards throughout the award lifecycle. It exempts NIH from having to release information that is necessary to maintain the integrity of the NIH extramural peer review and award processes. And, it allows NIH to protect confidential source-identifying material in the records too.

The Final Rule ensures that certain products developed during peer review remain confidential and exempted from release under the Privacy Act. Such information includes names and affiliated institutions that could identify those who write references or letters of recommendation for training or fellowship applications as well as individual peer reviewers assigned to an application. By maintaining their confidentiality and trust, we can help these experts to feel comfortable sharing their candid and objective assessments of proposed research ideas—critical for maintaining integrity in the overall peer review process.

It should also be noted that pre-decisional information, such as detailed information on unfunded applications and review findings for all applications, can be protected from release too. While we make abstracts, administrative, and certain identifiable information available on our funded grants, information on unfunded ideas, applicants, and investigators generally remains protected.

NIH will continue to take the appropriate steps to protect and secure any sensitive and personally identifiable information held within eRA and our other systems. We recognize the importance of being proper stewards of this information.  As a public agency, we balance this stewardship role with ensuring the transparency of certain grants data, so the public can better understand the extramural research decisions we make in support of our mission.

Want to learn more? You may be interested in reviewing the eRA systems notice and listening to our recently released All About Grants podcast on the topic of privacy (MP3 / Transcript).