December 7, 2017 Minutes

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Attendees: Eric, Ingeborg, Rebeka, Mike, Karnika, Lauren

Apologies: Jasmine


  • Review of Action items (see table below)
  • Next steps, as needed
    • Communication plan, timeline, deliverable goals
    • Complete Resource ListResource List
    • Outline for White paper Jan 2
    • Writing of White paper Jan 4-18
    • Review of White Paper Jan 11
    • Revision of White Paper Jan 25
    • Poster due Feb 9
    • v. Delivery of white paper, March 4-6 2018 Phuse Meeting
  • Split the writing of the White paper put together


  • Dec 14 2017
  • Jan 4 2018
  • Small team of writers meet weekly (if possible) (15 minutes)
  • Draft for review on the 18th Jan
  • Review and refine 18 Jan - 8 Feb
  • Meeting on the 8th Feb to be final review
  • Submit on the 9th Feb

Resource List

  • Group 2 DV Subject Level Data Review Aug 17 (Abstract V2)
  • Functional Characteristics For Patient Profile V1 doc
  • FDA's initial work on a standard (from Armando Olivia, IH: need to post)
  • (Action item 7) Jan 1
  • (Action item 8) Jan 1

Review of Actions

  • Micheal- Recruit an official FDA liaison for out group - Elena???
  • Suzy - Investigate patient profile tools in use at FDA - Engage new liaison
  • PhUSE - Find out what FHIR group is working on and if patient narratives are in their current scope, first ask PhUSE FHIR group- Ingeborg send request to Trisha
    • Trisha is interested in working with our group
  • Ingeborg - How does FDA require narratives to be submitted, does a sponsor need to submit case summaries if the data is in SDTM format - Complete
  • All - Review/Add details of your position and company to spread sheet DataVisSLDR_Research,Tab,groupMemberMakeup
  • Rebeka/Eric - Brainstorm about what information to collect to determine metrics for evaluating patient profile visualization, tabular patient profiles, and patient narrative tools (ease of use factors, ability to work with different datasets, ability to customise display etc and what is important to users) . - (Complete)
  • Karnika to take over from Jasmine - Develop a survey to get more information from our group and the larger data vis group on use of patient profiles and/or look into having a group panel discussion (In process)
    • Thought about having a panel discussion
    • Patient profiles that could be advanced or used as a model
  • Mike - Looking for models for the patient profiles that could be advanced or used as a model there were checks to see what other organisations would have as their standard, continue to look for other in the industry that would have an advance starting point from what HL7 or CDISC have - (new, series of tool demos schedules by regular PhUSE group and it may be useful to do follow ups on patient profiles - Not beyond what we found out from the FHIR group and the document we are working off
  • Ingeborg - Armando's earlier efforts for patient narratives - may or may not be used for abstract