Do the social features on ProofPilot violate HIPAA regulations or compromise participant protections?
ProofPilot does provide social features to improve retention, increase awareness and generally make research more like other activities a participant engages in on the web and in life.
All ProofPilot social features are controlled entirely by the participant. They may determine the risks and benefits of using the features on a case by case basis.
No data is ever shared with social site (publically or privately), or to any other individual (including other researchers) without expressed permission and activation by the participant. There are absolutely no global features that a user sets to turn sharing on or off. Each share must be considered and activated individually.
A user may elect to do the following via social media:
• Invite others to a study by posting to their social media feed or sending via other electronic media. The user may do this whether or not they are involved in the study or not.
• Share a study insight. This insight may be personalized or generalized across all study participants.
• Share a reward notification. A user may share that they’ve received a reward from participating in a particular study.
Some studies may have specific social media components to them and the risks and benefits should be disclosed in the initial informed consent and likely again on the task intro page.
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).