Melissa Kline Struhl

DO YOU WORK ON AN IRB OR OTHER ETHICS APPROVAL BOARD! I want to talk to you!!

(1) I run a website (childrenhelpingscience.com) where over 100 research labs provide studies that children and families can participate in from home

(2) Participants consent individually to each study

(3) We provide template consent forms that researchers can use, as well as automatic tools for implementing other best practices for informed consent

(4) Most IRBs asks for *some* changes to the consent form, especially around how data will be used after collection

(5) This creates a bad situation for families that lowers their ability to consent with full information - every single form is slightly different and the differences that really matter are hard to spot.

(6) As an infrastructure provider, I'd like to solve this!

Jun 30, 2023 at 7:14pmWeb
Show threadMelissa Kline StruhlJun 30, 2023

With an actually standardized consent process, not only can families get used to seeing & agreeing (or not) to the same terms, as a platform we can provide education to families that will enable them to better understand their choices and what it means to participate in research!

So on to my question: Have you seen something like this work before? What would keep you/your IRB from being able to work with a solution like this? What kinds of provisions would make you feel comfortable approving something like this for researchers at your institution?

And finally, where can I learn about this other than social media? What kinds of groups/forums/conferences might be good places to learn more about this?

One example of what I'm thinking about is this excellent project - open-brain-consent.readthedocs.io Unlike this project, I am not handling health/biometric data, I *am* handling data from minors, and like this project I am very invested in ethical solutions for open data sharing

Show threadMelissa Kline StruhlJun 30, 2023

Here are our current consent templates:

Explanation of how we do consent, parametrization options: https://lookit.readthedocs.io/projects/frameplayer/en/latest/components/exp-lookit-video-consent/doc.html

(These are set to be fully configurable because there is no section that some IRB does not want to potentially modify...as they should be able to do, under the current model, but hence the problem)

Actual text here: https://github.com/lookit/research-resources/tree/master/Legal

exp-lookit-video-consent — Experiment runner documentation

Show threadAbigail GobenJun 30, 2023

@melissaekline i'm on the biomed board for my IRB. I assume the short version of why not standardized == lawyers.

Happy to connect if further chat would help or to put you in touch with the head of our office of protection to see if she has ideas.

Show threadAlex UsedToGoToVeniceJul 1, 2023
@melissaekline you tend to work faster than we fund but this is the kind of thing wed fund under the Methods PFA if it were geared toward PCORI/CER: https://www.pcori.org/funding-opportunities/announcement/improving-methods-conducting-patient-centered-outcomes-research-2023-standing-pfa-cycle-2
Improving Methods for Conducting Patient-Centered Outcomes Research -- 2023 Standing PFA (Cycle 2)

Improving Methods for Conducting Patient-Centered Outcomes Research -- 2023 Standing PFA (Cycle 2) | PCORI