2018 Learning Engagement Conference

Each year the Greater Plains Collaborative Clinical Data Research Network holds a gathering of patients, patient advocates and caregivers, along with the academic leaders from each GPC site, in Kansas City, MO. This is a great opportunity for patients and other non-academics to learn about PCORnet, the CDRN program, and the GPC in general. GPC representatives meet face-to-face with one another for discussion on current GPC activites and future goals. We learned during previous Learning Engagement events that attendees who subsequently became involved in other GPC activities and governance more fully understood what PCORnet is all about, which is critical for full participation and contribution. This year we will be combining our Learning Engagement Conference with our annual Hackathon, which serves as an opportunity for Dev team members to meet face-to-face and work on current issues and milestones. 

When: Monday, December 10th & Tuesday, December 11th, 2018

Where: Kauffman Foundation Conference Center, Kansas City, MO

  • 4801 Rockhill Road, Kansas City, MO 64110



    1. Participants shared what the word “engagement” means to them:
  • Using a liberating structure called “TRIZ”, the group worked in small conversations and then as a table and group in reaction to this question:
    • “What would engagement ‘perfect failure’ look like?”
      • Arrogance
        • Researcher unwilling to admit they need input — our input is “below” them
      • Ask for input but actively don’t use it
      • Don’t care about patient confidentiality
      • Assume patients are seeking medicine/treatement/money
      • De-humanize
      • Lack of diversity
      • Lack of feedback — don’t disseminate findings especially in community methods
      • Assume data gives a comprehensive picture
      • Measre stuff patients don’t care about
      • Assume patients are uneducated
      • Data isn’t people
      • Don’t tell anyone what you’re doing — it might scare them
      • No marketing
      • Big egos
      • Bias
      • Not listening
      • No compensation
      • No funding/budget
      • Not identified stakeholders
      • Not big picture/transparent
      • No plan for results for community
      • Not meeting participants where they are (ex. Church, library, etc.)
      • Don’t ask/listen
      • No bi-lateral communication
      • Ass-u-me
        • Values
        • Life
        • No questions
      • Don’t connect with community
        • Population base
        • Clinician
        • People researching
        • Don’t care about community/patient
        • Care only about publishing paper
        • Primary goal is to get funding
        • Black/white view of world
        • Don’t understand/appreciate patient needs
        • Don’t walk-the-talk
        • Self consumed …”I know…”
        • Do not show respect/appreciation
  1. Discussion focused on developing a roadmap/workplan for engagement in GPC 2.0.  Workplan priorities are underlined (and group added elements during the session).
    • Vetting Research to be Conducted/Governance
      • Training — researcher
      • Adapt Training — patient
      • Training — community
      • Training — health system
      • Training — clinicians (networks)
      • Training — story telling
      • (focus on mileage and examples for the above trainings)
    • Returning results models and examples
      • IRB dissemination requirement
    • Community convenings (meeting of the minds model)
    • GPC Resource Center
    • Updated GPC Organization Chart needed
    • “Front door” etc. requests –> flow chart
      • How do requests come in?
      • How are they reviewed/decided?
    • Returning Results 
      1. Townhall meetings to share
      2. “Personal” results (no study outcomes)
      3. Ensure dissemination is in IRB
        • (Maybe vary time when ask patient about receiving)
      4. Use patient’s expertise and preferences
      5. Provide good examples — stories
    • Requirements to participate in GPC
      • GPC PIs = champions
      • PIs need evaluation
      • Program Directors = champions
      • Examples of when its “right”; team science
      • Make engagement components of studies carry more weight
      • Stories and examples
      • Systems — level engagement
    • Broad communication
      • Understanding traditional/lack of care
        • (cultural)
      • Sensitivity
      • Context of healthcare — perception
      • Age differences
      • Research has to be inclusive and involve diverse people
      • Ways to communicate
        • Workshop
        • Social media
        • Storytelling
        • Video
        • Use community connections
        • Beyond media and peer papers
      • Focus on the why (leaving out communities at the beginning)
    • Readiness/Needs
      • “Meeting of the minds” – 6 min who needs researcher priorities
      • ID ready communities + patients who are ready to partner
        • **Training for research teams 2 Utah guide books + workshops
        • “How to” –> modify
      • IRB partnership
      • GPC study stories of GPC engagement
      • ID people with community health passion
      • Professional experience in data but not patients/researchers
      • *Big data training — find resources to inform our efforts/Komen/Carol