Establishing a foundation of trust is at the core of effective partnerships. Successful patient and family collaboration in research is dependent upon open and transparent communication and relationships that are genuine. Listed by many PFAs as their top dissatisfying experience is “tokenism.” PFAs don’t want to feel that their participation is simply a checkmark in a box for researchers. They want to be active, contribute, and know they’re making a difference. They need to believe that their voice is of equal value among all team members and that they can speak honestly and freely. Trust and an atmosphere of partnership take time to develop.

Tips from the Field

  1. Devote time for the partners to get to know each other.
    • Distribute short bios for all team members, including PFAs.
    • If a researcher is planning to partner with a PFAC, share the most recent PFAC annual report or a summary of projects and achievements.
    • Allot extra time for introductions at initial PFAC or committee meetings.
  2. Make it fun.
    • Regularly engage in brief yet meaningful “get-to-know-you” activities and icebreakers.
    • Provide opportunities for team members to socialize. For example, plan 30 minutes for snacks and conversation before meetings begin.
  3. Keep abreast of life events.
    • Engage in a quick personal check-in of important life events during the first five minutes of every meeting.
    • Remain flexible and plan for “life events” that arise so that project progress continues. Patients and families may need to take a break or participate in a different way (e.g., virtually).

ACTIVITY: Icebreakers

To make initial meetings fun, use these icebreaker ideas.