Tentative Meeting Agenda

Meeting 1 agenda (took place via email on February 18, 2016)

Meeting 2 agenda (took place via email on  April 8, 2016)

Meeting 3 agenda (took place via email on May 9, 2016)

  • Overview of the previous PowerPoint (PPT) presentations
  • Results of the PPT#2 evaluation survey
  • Additional patient/parent personal stories
  • Examples of published epidemiological/patient outcomes studies done by including genetic information
  • Examples of genetic research done by our CAB members (Scientists) in relation to patient outcomes
  • Project website-Update
  • What is next?

Meeting 4 agenda (took place via email on June 6, 2016)

  • Overview of the previous PowerPoint (PPT) presentations
  • Results of the PPT#3 evaluation survey
  • Overview of existing resources that include patient genetic data and clinical information, potentially useful for genetic studies:
          PCORI resources such as PCORnet
          Non-PCORI resources such as eMERGE

  • Examples of technologies facilitating research
          Prometheus, LLC
          Pathfinder, Inc

  • Overview of Electronic Medical Record (EMR) systems
          Objectives
          Challenges


Meeting 5 agenda (took plae via email on August 5, 2016)

  • Overview of the previous PowerPoint presentation (PPT#4)
  •  Results of the PPT#4 evaluation survey
  • Overview of the ethical issues and genetic testing (NIH website)
  • Overview of the ACMG and ASHG guidelines on genetic testing
  • Stakeholders’ (patients, physicians, researchers) comments on using genetic information in health care decision making
    • Comments gathered from reports/publications
    •  Feedback collected from our study participants (CAB)
  • Roadmap: a tentative draft
  • Project website: update
  • What is next?
    • Meeting 5-PowerPoint Presentation (PPT#5) 
    Meeting 5-Group Discussion
    Meeting 5-Evaluation Survey

Meeting 6 agenda

  • Overview of the previous PowerPoint (PPT) presentations
  • Results of the PPT#5 evaluation survey
  • Finalize the road map drafted in PPT#5
  • Discuss next steps for the CAB and how they may contribute to the implementation of the developed road map
  • Discuss a survey to be administered in future studies for obtaining stakeholders input about needs and barriers about inclusion of genetic information in PCOR studies.
  • The Project Evaluation Survey #2:
         Objective (assess participants’ knowledge gained and overall satisfaction)

         Content

  • What is next?