Introduction and Objectives:
The National Hemophilia Foundation (NHF) has offered the Inhibitor Education Summits (also known as the summits), a live consumer education conference, annually for more than ten years. The summits are for people with hemophilia A or B with an active or tolerized inhibitor and their support network. In 2017, NHF introduced a new component to the conference: Inhibitor Teams.
Materials and Methods:
NHF met with the National Inhibitor Summit Steering Committee in 2016 and developed the idea of Inhibitor Teams as a way to better engage participants by connecting them with other members of the inhibitor community that they might not otherwise meet. Inhibitor Teams are small groups of randomly assigned participants that meet three times throughout the conference. Some Inhibitor Summit faculty and NHF staff moderated their pre-assigned group’s discussions as Inhibitor Team Leaders. Inhibitor Team Leaders were trained prior to each summit. Each participant’s badge included their Inhibitor Team name on it as a way for participants to easily identify their team members. The conference app was adapted to foster team member connection.
Results:
A total of 214 families (727 individuals) attended the summits in 2017. Of these families, 11.21% had never attended summit before, so connecting with fellow participants was particularly meaningful. Likewise, active inhibitors were represented in 56% of the families; through their Inhibitor Teams they could connect with others that have been or are going through the challenge of an active inhibitor. Participants on average agreed (4.19 on a 5 point Likert Scale) that they found value in meeting with their Inhibitor Team. Qualitative evaluation data collected also supports this. For example, one participant said, “teams were a great way to meet folks I otherwise may or may not have met or got [the] chance to talk to. Like meeting others that share same life experiences as myself and my family.”
Conclusions:
Inhibitor Teams were a welcomed addition to the Inhibitor Summit program in 2017 with participants finding value in the time spent with their team.