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User Advisory Committee Agenda

Sep 15, 2017 (1-3pm Central time)
School of Public Health, Room 147 (Webex: https://hsc-tamu.webex.com/join/kum)
Call in: 1-855-797-9480 (Access code: 928 569 839)
Committee Notes

  1. Short Introductions (10 min)
    • Hye-Chung Kum (PhD, MSW), Principal Investigator, Texas A&M Univ., Computer Science (information privacy), secondary data analysis (user)
    • Alva Ferdinand (DrPH, JD), co-Principal Investigator, Texas A&M Univ., Public Health and Law, IRB, DUA, secondary data analysis (user)
    • Cason Schmit (JD), co-Investigator, Texas A&M Univ., Public Health and Law, Information Privacy, IRB, DUA
    • Ben Nowell, PPRN, Great Healthy Living Foundation; Arthritis Power Patient Powered Research Network (PPRN)
    • Robin Clark, U of Mass., MA all payer database
    • Alison Fraser, U of Utah, Linking data for cancer outcomes
    • Stacie Dusetzina, UNC at Chapel Hill, Pharmacoepidemiologist, HSR
    • Sean O'Brien, Duke University, PI of PCORI project on Privacy (Methods committee)
    • [tentative] Robert Ohsfeldt, Texas A&M Univ., Linking claims data

    • Can not attend.
      • Leonard J Nelson, ELSI Expert, Vice chair of the IRB for St. Vincent’s and St. Vincent’s East Hospitals
      • Michael Morrisey, Texas A&M Univ., Linking claims data
      • Jean Cadigan (PhD), Consultant, UNC at Chapel Hill, ELSI, IRB, Qualitative Research Methods
      • [tentative] Eva Shipp, Texas A&M Univ, Research data network PI
      • Li Xiong, Emory University, PI of PCORI project on Privacy (Methods Committee)
      • [tentative] Peter Yu, Texas A&M Univ., HIPAA Privacy Officer (Methods Committee)

  2. Tutorial (30 min): Need Chrome browser

  3. Project Overview (20 min)
    • Project Aims
    • Results from User Study 1
    • Aim 3

  4. NGT Session Plan (45 min)
    • Discuss Planned session (goal: Build consensus on template IRB application & DUA when using PPIRL framework)
      • When using the PPIRL framework, what is the risk in the study?
      • When using the PPIRL framework, what is the benefit of the study?
      • When using the PPIRL framework, what information is needed in the DUA?
      • When using the PPIRL framework, how is the study protecting the identity of the participants?
    • Discuss Pre/Post survey

  5. Open Discussion (15 min)