Hello,
I’m seeking approval for my project:
https://www.openhumans.org/direct-sharing/projects/on-site/exercise-optimizer-for-chronic-pain/
https://www.openhumans.org/activity/exercise-optimizer-for-chronic-pain/
http://www.monstermizer.com/
Hey Olivier,
thanks for starting the thread here. One question that I’d have as a potential participant is: Will all the data of people that join be made publicly available on GitHub? Or is there a way to join without making the data public?
Cheers,
Bastian
Hey Bastian,
So far I’ve sent emails to participants saying something like: “I’m writing to you to let you know that I would like to open-source your anonymized data. If you do not want me to do so, please just let me know and I won’t do it.” (I write a bit more details than that of course).
I was thinking of doing the same thing on OH. Is that ok or is it not restrictive enough? I can make it more restrictive if necessary. I can update the summary of the project accordingly as well if necessary.
Best,
Olivier
Hi @Olivier I’d encourage you to read this and think about your application here in this context: Project Review Guide
General question: Is there some reason you need approval at this point?
You’re free to run the project and invite people to join, the main difference with “approval” is that there’s a max user cap (I forget, it’s pretty high – maybe 20).
My hunch is that you don’t need “project approval” at this stage. You can just use the project and see how it works for you?
But if you do seek approval, here’s some more concerns…
Major concern: your data sharing approach.
This is very concerning when the terms/consent you’ve shared didn’t inform users about sharing their data. As described in project guidelines, what you plan to do with data needs to be explained upfront.
Your project happens to ask for potentially sensitive data like location data. I can see from your GitHub repo that you haven’t made location data public (and you probably don’t think it’s relevant), but it’s unclear. You need to be a lot more explicit about what you do so people are making an informed decision when they join.
Moderate concern: this isn’t a study with IRB oversight.
This is described as a study, but is there an IRB (or equivalent) ethics review board that oversees it? In Open Humans we prefer to reserve the status of “study” to things that have that, and otherwise avoid communicating any sense that a project has had that sort of oversight.
Hi @madprime,
Thank you for your answer.
Ok, no worries, I won’t seek project approval at this stage.
I may reapply later.
Best,
Olivier
Okay @Olivier! In the meantime, please feel welcome to use the community slack chatroom to share ideas and ask questions. You can join using this link: http://slackin.openhumans.org/