Guidance for online focus groups/interviews and privacy issues


#1

Wondering about doing online focus groups and seeing people’s backgrounds/homes. Is there any other protocol, other than release forms, that I should consider? Any language I should include? Is there discussion or this or any “official” guidance anyone has seen anywhere?
Thanks.


#2

I don’t have a complete answer for you, just some general thoughts…in terms of seeing other people’s backgrounds/home, I would make sure that participants are aware of this (not everyone thinks about this) and to ensure that they are only including what they want in view or permit them to have their video off if desired. Alternatively, you could have the video for participants disabled to enhance privacy for them.

In terms of language for the informed consents, I do my best to include some statement about what is being said within the group remaining within the group for focus groups. With a virtual group, I would want people to do their best to be away from any others who might be in the location with them and/or to wear headphones if possible to minimize who might overhear what is being said.

I’m not aware of official guidance on this, however, I have come across best practice books/documents. None of these related specifically to digital focus groups/interviews, though.


#3

Sorry I’m just getting to this! This is a can of worms - long opened but now even more vital - that needs more attention, so thank you @MuseumPartners!

In addition to the helpful thoughts from @jrmolle2, to make a consent form that in any way reflects reality, you/we need to know the polices of the platforms involved…and many of those are truly the stuff of dystopian nightmares.

As soon as schools started closing locally, I was volunteering some guidance to school districts. Initially, I was irritated that they were suggesting Zoom, a company with a well-documented track record of severe privacy problems and intentionally vague privacy in their ToS. (It hasn’t improved much, but here we are.) I figured that surely, there must be good guidance out there, and they were ignoring it…but no. Even the US federal government HHS completely punts, just giving a list while admitting that they did not vet any of the platforms/programs listed!

So…if this is the case with HIPAA, what are researchers and evaluators supposed to do?

I personally host my own if it involves any data collection. Other than that, I think we need to commit to reading the legalese of every ToS for every platform we use…which is a very specific circle of hell.

If you want to discuss it further, let me know!