wiki:PioneerFriends

The Pioneers site went live in the fall of 2013 in milestone:Pioneers3.

Origins of the Pioneers Project

In CTSA meetings, Karen B. (regulatory) is seeing a pattern of investigators who want to maintain a pool of study applicants. Jeff B. has seen likewise. At AMIA, Russ saw that other CTSA sites (e.g. U. Michigan) are organizing a shared recruitment facility.

So we're planning a Pioneer participant portal (registry?), where people in the community can register as friends.

  1. to get notices about upcoming and enrolling trials
  2. to fill out pre-screening surveys
  3. in the long term, to look at their medical records, perhaps with an indication of how they compare to larger communities.

In a Sep 6 2012 meeting, Russ sketched two use cases:

  1. general pioneers, with the opportunity to take various pre-screening surveys
  2. already interested in a condition (tinidis? foot fungus); after signing up, go straight to the tinidis pre-screening survey (#1223)

Therefore, we don't need many detailed questions in the generic consent form (#1224). "Other exciting studies are coming." We don't want to miss that.

Requirements: IRB-approved Study Protocol

Patty sent a copy to Dan, Jo, Russ, and Tamara Thursday, August 02, 2012 12:33 PM. Is that the one approved by the IRB?

Initial Launch Milestones

Storyboard

roles:

  • Pioneer/Patient? (surrogate?): Jim, Jane, Bob, ...
  • Patient advocate: Jo Denton
  • Informatics
  • Investigator

Pioneer Jim Signs Up

initially based on Dec 10 sketch in 1224 as well as notes in ticket:1041#comment:15.

We have a signup1.doctest automated test for this first use case #1224:

  1. Jim starts at the pioneers homepage, per the VML sketch (#1577)
  2. He follows "Become a Pioneer. Join Us" to an account creation page.
  3. He chooses a username and provides email, first name, last name (#1907), and submits his account request. Drupal says "A welcome message with further instructions has been sent..."
    • What if the username he chooses is already taken?
      • We discovered Apr 3 that Drupal handles this. Let's keep our automated testing to just features we build, unless we see problems.
  4. Jim follows the link from his mail message and sets up a KUMC-happy password #1657
    • If he gets frustrated, he can contact pioneers by email #1662
  5. Jim sees "Thank you for choosing to become a Pioneer" on a welcome page.
    • We eventually figured out how to configure the next page after account creation.
    • Perhaps a "you are here in the process" page, noting the pre-screening survey, and possibly study-specific surveys (e.g. foot fungus #1223). Maybe use the drupal user page for this?
  6. He follows a "Complete your medical history form" link
    • We associate his REDCap response to his Drupal account #1403 similar to HERON system access agreements #574.
  7. He fills out the consent form and signs it.
  8. On submission, he is taken to the list of active studies.

Pioneer X Signs Up as a surrogate for Y

todo: personalize X and Y with names. Review study protocol.

#1224

Jane wants to use her Facebook account

see #1041

Investigator promotes their study via Pioneers

already interested in a condition (tinidis? foot fungus); after signing up, go straight to the tinidis pre-screening survey (#1223)

Pioneer Pre-Screening Update

tracking this under #1224, for now.

  • As pre-screening info ages, how to update it?
    • The solution for maintaining areas of specialty and such for frontiers (#1137) is fairly expensive in development time and doesn't clearly scale to multiple screening forms.
    • Having registry staff manually update the info seems more likely to be cost-effective.

Bob is turning 18

He wants to migrate info about him to his own account. (see also #1659)

Investigator Feasibility Query

Investigator: is my study feasible? ... more on the whiteboard

Investigator Contact Query

  • How do investigators get info out of the registry? (#1637)
    • They make a request to the DRC
    • HERON is enhanced to support query of the registry data (see also #1107, #1017, #1636)

Pioneers Update meeting series

meeting summaries filed under #1661 editorial, ideally with misc notes in relevant tickets.

Misc from 19 Apr, 2012 Meeting

Russ Waitman, Patty Kluding, Tamara McMahon?, Karen Blackwell, Dan Connolly

collaborate with Wilbanks on the applicability of the portable consent project?

Image attached shows planning brain-dump for registry.

Use case figure:

attachment:FrontiersPioneersUseCase.JPG

Patty's April 19, 2012 meeting notes, amended with notes thru May 9 2012.

Community Engagement

What existing methods are being used to engage the community about trials? Russ says the cancer center's facebook presence is perhaps the best at KUMC.

Last modified 3 years ago Last modified on 07/30/14 14:23:09

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