IRB and access to participant identity

[HF2021]

Hi all, Given an IRB's privacy requirements and restrictions on access to participant identity, does anyone other than collaborators on a study have access to the names of individuals who have participated in a specific study? In particular, do any Finding Five employees or administrators have such access, or is this information encrypted and only accessible by the owner's of a study and their collaborators. Thank you!

[Ting]

Hi - one bit of clarification first: FindingFive is a volunteer-support nonprofit, so we don't have employees. We have a voluntary staff.

As for your question, our official answers are in our Privacy Policy: https://help.findingfive.com/privacy.html and expanded in this FAQ: https://help.findingfive.com/rfaqs.html#...ifiability. We *highly* recommend reading through the FAQ section in detail.

In terms of your specific question about access, the binary answer is yes, FindingFive has access to all participation info for all studies. This is necessarily so for our service to operate, as stated in our Privacy Policy. However, it's not like we can just turn on our laptops and immediately access the data. You can read more about how we secure the data on those pages.

[Ting]

I just realized that my "necessarily so" answer may not be so clear. Sorry. What I meant was that FindingFive must be able to know who did your experiments; otherwise, we wouldn't be able to tell you who did the studies. I believe this is true for all platforms - if you recruit on A or P, they as the platform must (and in many cases required to) store info on who used their platforms to do what.

From participants' perspective, we must also hold this info in case there's a monetary dispute. Imagine if FindingFive as a platform doesn't know who did what study, and there's money involved, what a mess it will be!

Hope this helps!

[HF2021]

Thank you!