Changes between Initial Version and Version 51 of PioneerFriends


Ignore:
Timestamp:
07/30/14 14:23:09 (3 years ago)
Author:
dconnolly
Comment:

oops! there was no link to the actual pioneers site!

Legend:

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  • PioneerFriends

    v1 v51  
     1[[PageOutline]]
     2
     3The [https://pioneersresearch.org/ Pioneers] site went live in the fall of 2013 in milestone:Pioneers3.
     4
     5== Origins of the Pioneers Project ==
     6
     7In [[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. [https://friend.weblogin.umich.edu/friend/ U. Michigan]) are organizing a shared recruitment facility.
     8
     9So we're planning a Pioneer participant portal (registry?), where people in the community can register as friends.
     10
     11 1. to get notices about upcoming and enrolling trials
     12 1. to fill out pre-screening surveys
     13 1. in the long term, to look at their medical records, perhaps with an indication of how they compare to larger communities.
     14
     15In a Sep 6 2012 meeting, Russ sketched two use cases:
     16
     17 A. general pioneers, with the opportunity to take various pre-screening surveys
     18 A. already interested in a condition (tinidis? foot fungus); after signing up, go straight to the tinidis pre-screening survey (#1223)
     19
     20Therefore, 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.
     21
     22== Requirements: IRB-approved Study Protocol ==
     23''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?''
     24
     25== Initial Launch Milestones ==
     26
     27  - milestone:Pioneers1 was an internal review of the web site design and user experience
     28  - milestone:Pioneers2 was the initial external "soft launch" milestone
     29  - milestone:Pioneers3 is the initial publicized release
     30
     31
     32== Storyboard ==
     33roles:
     34
     35 * Pioneer/Patient (surrogate?): Jim, Jane, Bob, ...
     36 * Patient advocate: Jo Denton
     37 * Informatics
     38 * Investigator
     39
     40=== Pioneer Jim Signs Up ===
     41
     42''initially based on [ticket:1224#comment:5 Dec 10 sketch in 1224] as well as notes in ticket:1041#comment:15.''
     43
     44We have a `signup1.doctest` automated test for this first use case #1224:
     45
     46 1. Jim starts at the pioneers homepage, per the VML sketch (#1577)
     47 1. He follows "Become a Pioneer. Join Us" to an account creation page.
     48 1. 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..."
     49   * What if the username he chooses is already taken?
     50     * We discovered Apr 3 that Drupal handles this. ''Let's keep our automated testing to just features we build, unless we see problems.''
     51 1. Jim follows the link from his mail message and sets up a KUMC-happy password #1657
     52   * If he gets frustrated, he can **contact pioneers by email** #1662
     53 1. Jim sees "Thank you for choosing to become a Pioneer" on a welcome page.
     54   * We eventually figured out how to **configure the next page after account creation**.
     55   * 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?
     56 1. He follows a "Complete your medical history form" link
     57   * We associate his REDCap response to his Drupal account #1403 similar to HERON system access agreements #574.
     58 1. He fills out the consent form and **signs it**.
     59 1. On submission, he is taken to the list of active studies.
     60
     61=== Pioneer X Signs Up as a surrogate for Y ===
     62''todo: personalize X and Y with names. Review study protocol.''
     63
     64 #1224
     65
     66=== Jane wants to use her Facebook account ===
     67
     68see #1041
     69
     70=== Investigator promotes their study via Pioneers ===
     71already interested in a condition (tinidis? foot fungus); after signing up, go straight to the tinidis pre-screening survey (#1223)
     72
     73=== Pioneer Pre-Screening Update ===
     74''tracking this under #1224, for now.''
     75
     76 * As pre-screening info ages, how to update it?
     77   * 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.
     78   * Having registry staff manually update the info seems more likely to be cost-effective.
     79
     80=== Bob is turning 18 ===
     81He wants to migrate info about him to his own account. (see also #1659)
     82
     83=== Investigator Feasibility Query ===
     84Investigator: is my study feasible? ''... more on the whiteboard''
     85
     86=== Investigator Contact Query ===
     87 * How do investigators get info out of the registry? (#1637)
     88   * They make a request to the DRC
     89   * HERON is enhanced to support query of the registry data (see also #1107, #1017, #1636)
     90
     91== Pioneers Update meeting series ==
     92
     93meeting summaries filed under #1661 editorial, ideally with misc notes in relevant tickets.
     94
     95 * [ticket:1661#comment:8 March 6, 2013]
     96 * [ticket:1661#comment:10 March 13, 2013]
     97 * [ticket:1661#comment:12 March 27, 2013]
     98 * [ticket:1661#comment:14 April 3, 2013]
     99 * ...
     100 * May 1: see mail from Bhargav Wednesday, May 01, 2013 9:47 AM
     101 * [ticket:2047#comment:4 Jun 5, 2013]
     102
     103== Misc from 19 Apr, 2012 Meeting ==
     104Russ Waitman, Patty Kluding, Tamara McMahon, Karen Blackwell, Dan Connolly
     105
     106collaborate with Wilbanks on the applicability of the [http://weconsent.us portable consent] project?
     107
     108Image attached shows planning brain-dump for registry.
     109
     110Use case figure:
     111
     112attachment:FrontiersPioneersUseCase.JPG
     113
     114[https://www.evernote.com/shard/s205/sh/e89bcc8e-f908-443c-a595-621af108ea1e/001bb414fabcff5a7e909ab3b5042db3?noteKey=001bb414fabcff5a7e909ab3b5042db3&noteGuid=e89bcc8e-f908-443c-a595-621af108ea1e Patty's April 19, 2012 meeting notes], amended with notes thru May 9 2012.
     115
     116=== Community Engagement ===
     117What existing methods are being used to engage the community about trials? Russ says the [http://www.facebook.com/kucancercenter cancer center's facebook presence] is perhaps the best at KUMC.