FRANK ENGELMAN   •   about 2 years ago

What does this require in the submission?

"and how it includes modeled consent for recontact."

• 2 comments
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  Henry Wei Manager   •   about 2 years ago

  Great question. Here is some potentially helpful context. Patients and end-users of the potential systems for Track 1 and Track 2 need to be asked for consent for a few main potential uses:
  1. For their data to be used in aggregate in clinical research
  2. To be contacted again in the future for clinical trials
  3. Other potential uses that entrants may have for the patients & users’ data.

  The key is to make this clear to users and ask for their consent for this to occur.

  If it isn’t clear to the judges how this awareness and consent is obtained, eg from the demo, slides, and/or prototypes they have access to, then the judges may not be able to recognize the entry as meeting this basic requirement. But it doesn’t have to be complicated — it just has to be a clear step for the end-user/patient .

  One stringent example of how clinical trials seek consent for recontact in the future is available online:
  https://www.unthsc.edu/research/wp-content/uploads/sites/21/Re_Contacting_Guidance_for_Investigators.pdf

  Challenge participants may wish to search online for examples and templates that get at “Would you like to be contacted about future research?”.

  It would be great to hear from other hackathon/challenge community members, patients and research experts if they have any other suggestions.

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  Private user Manager   •   about 2 years ago

  The University of Washington also has a thorough resource on "Reconsent and Ongoing Subject Communication" linked here (and posted in the Resources tab): https://www.washington.edu/research/hsd/guidance/consent/#11

  One key takeaway from the above resource = someone who interacts with a project that collects data should be reasonably informed about the possibility of future contact for other reasons/purposes that may arise

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