Does showing the name of a participant who invited a user to a study violate confidentiality?

To increase study credibility, reduce stigma, and make studies a more engaging fun activity, ProofPilot gives participants the opportunity to invite other participants. They may do so by sharing on Facebook, Twitter, LInkedIn, and in the future via e-mail and other social media or chat apps.

An invitee does not have to invite others – they must weigh the risks and benefits of inviting themselves. The invitee is not necessarily participating in the study. They may have just happened to come across the participant recruitment page, and thought it was interesting, and therefore shared it with others.

There may be unique circumstances when seeing the number of friends participating could be a problem for a study. Under normal circumstances, this feature increases the credibility of the study within a social network without identifying who in a potential participant’s social network is actually engaged.

The number of friends participating feature may be hidden on studies at the “Advanced Level.”

For more information on participant requests to interact with their data electronic form please see the Final Omibus Rule p.5634 (so a search in the doc for 5634 as it is not a page number).