Approval for QCycle

Governance Activity Reviews
#1

I’m posting a review request for the QCycle project, which is applying for project approval. The project is part of a research study led by Azure Grant at the UC Berkeley & Quantified Self.

Should this project be visible and available for all Open Humans members to join?

Please vote Approve or Deny , and/or comment.

Quick links

Project info

#2

Thanks very much Bastian! I’ve updated our profile as well.

#3

I see some issues/questions I want to ask about…

  • IRB & cetera? I think this is listed as a study… is there documentation of IRB approval? Also, I’m a bit confused regarding whether there’s an informed consent document? (Should that be presented prior to authorizing Open Humans?)

  • communications from the community guidelines & project review guidelines, there’s some items that seem unclear to me…

    • what will be done with data, data management, in particular, what happens if someone leaves the project.

    • what is in the oura data that may be received by the project? oura ring wearers probably have a good feeling for this, but it’d be nice to have a couple words on this e.g. “temperature, activity, and sleep data”

  • minor issues/typos…

    • “VCF” on the FAQ (seems probably copy/paste from the previous code)
    • also from the FAQ: what’s the slack channel? maybe more info there?
#4

Hey Mad:

  1. Yes, we have an IRB and I’ve been keeping documentation of our consent form. This is a question for you though: the IRB for this pilot study, but people may want to share their Oura data on Open Humans for a wide variety of reasons. Open Humans has it’s own consent page that I have to accept when joining the project-- I thought that this was an OH specific IRB on your end, is that correct? I can send you guys the study IRB we can briefly chat about if you think it needs amending to suit anyone who might join?
  2. Communications: These are covered in the IRB and consent form
  • When someone leaves the project, they can disconnect and / or delete their data from the project. As for data I’ve already downloaded of theirs, I will delete it from my computer on request. The only data I don’t delete is that which has already been de-identified and aggregated by me (although I have a key for most of this info that I could use to remove the data).
  • We receive timeseries of skin temperature, heart rate, respiration, sleep timing, heart rate variability and activity, as well as days of menstruation.

Minor Issues:
I think the faq https://oh-oura-connect.herokuapp.com/about/ covers this — I’m not seeing a “vcf” ? What is this?

I should delete the slack channel mention – people ended up prefering email and the website and we didn’t end up using slack.

Thank you for the careful questions! Would love to have your feedback on the IRB — writing an IRB general enough to wear the needed hats for the project was a challenge – I’m sure you’ll have helpful tips if we need an amendment.

#5

Hey @azuredominique sorry I’m finally catching up now! Please feel free to get my attention in Slack, it’s a good way to get my attention these days. (So many communication channels…)

1 – IRB & Open Humans

Open Humans has it’s own consent page that I have to accept when joining the project-- I thought that this was an OH specific IRB on your end, is that correct? I can send you guys the study IRB we can briefly chat about if you think it needs amending to suit anyone who might join?

We don’t run any IRB study. We used to have an IRB for our “public data sharing” feature – which was framed as a study – but that was a tenuous claim, it’s not “research” to give people an ability to share data (indeed, the IRB questioned it at the time). That study framing has been retired.

We do have terms of use, and those connect to agreeing to follow the site’s guidelines and policies.

I or @gedankenstuecke could probably give feedback on study protocol and consent form to see if it seems reasonably accurate and not conflicting with our site (which is generally pretty open-ended). You’ll have to share and ask, we don’t

2 – Regarding data and deletion/withdrawal & other information, I think maybe a bigger issue is that the informed consent form is never seen/signed by someone joining via https://qcycle.herokuapp.com ?

Don’t you want someone to sign the consent before (or when) they join & share data with the project via Open Humans?

Otherwise, your project will start receiving data from people that didn’t consent to the research study?

Maybe the front page of the site should be the consent form and a button that says “I agree”?

(It’s possible I’m not clear on what the plan is for having this project approved and visible, available for all Open Humans members to join.)

4 – the “vcf” is here, as is the slack mention: https://qcycle.herokuapp.com/about

#6

Update following Slack conversations & cetera – I helped @azuredominique with updates to the site to address the issues I saw.

Mainly it just needed the informed consent to be part of the joining process. The site also keeps a record of “signatures” going forward.

Maybe @azuredominique can weigh in now if this is good?

Feedback from anyone else?

#7

Looks good to me! Thank you for all your help.

1 Like
#8

looks good to me too!

#9

Okay, marking this as approved now. Sorry it took a while! :+1:

1 Like
#10