How do you handle "pass through" data from sub-grantees in terms of consent, etc.?

Questions
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Hey y’all!

I am working on a project for my full-time job where we have shared tools with sub-grantees (things like interview questions, surveys, etc.) so that they can collect data from their participants. Program participants are attending sub-grantee programs in person all over the country, and we plan to use this data for quality improvement and marketing. We would like to share the findings from this data in a white paper (or other public report). Participants are from a variety of locations and backgrounds, including some children and adults with disabilities, who are all considered “vulnerable” research groups. However,

If I were collecting this information myself, I would use consent forms, etc. But… I’ve never worked with sub-grantees before, so I’m not quite sure what to do or how strict to be. Likely, their program staff (who I assume are fingerprinted, trained, background checked, etc.) some of whom are full-time employees of government agencies, will be collecting this data. Do I need to require that they get consent forms signed? Or can I just use whatever data they send?

Would love some advice!

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I’m in the midst of doing something similar, and have the same questions. Last time this came up, our IRB was ok with idea that this was secondary data (already collected for another purpose) used for evaluation, which satisfied the IRB. This time though, I’d like to help my collaborators have prior approval if possible, or at minimum follow good practice for obtaining consent. So I’ll be closely following this discussion.

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Hey there @DaraMurray and @marciambm thanks for bringing up this really important topic. From an equity perspective, informed consent is a critical factor in setting up a health data relationship. I would recommend envisioning how you’d like the relationship all along the data collection and usage pipeline to look - and who is getting prioritized at each of these steps. Our data relationship checker might be helpful.

You could include your guidance on getting and maintaining informed consent as part of what you provide to your sub-grantees along with the questions, etc.

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great information, thank you.

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