For co-principal investigators of the Sickle cell Trevor Thompson Transition Study (ST3P-UP study) Raymona Lawrence and Ifeyinwa (Ify) Osunkwo, two significant lessons emerged from conducting a large, multi-site transitional care study: the importance of meeting community partners where they are, and the value of using creative strategies to support engagement in research. Effective engagement begins from approaching all introductions without titles, hierarchy, or “positions of power” in the relationship between researchers and the community.

The study, which includes 14 sites in 7 states, examines the effectiveness of peer support in reducing acute care visits and improving quality of life among youth with sickle cell disease (SCD) as they transition to adult care. Each participating site is represented by a “triad,” consisting of a pediatric SCD provider, an adult SCD provider, and a community-based organization. According to Lawrence, the research team faced some early challenges in uniting diverse sites and stakeholders.

Early in the study, the team noted significant variation among the sites in terms of their existing community relationships and capacity for community engagement. While partners at some sites had limited interaction prior to the study, other triads had worked together extensively. According to Lawrence, sites approached engagement differently, and for some sites, engagement was a new concept. The study team worked iteratively with patient stakeholders and community partners to develop an operational definition of engagement and a purpose statement (see side box). These tools created a collective vision that helped individual sites explore the concept of engagement within their own unique contexts.

The research team has designated all study team members and patient partners with the common title of E-SCA, or “engaged sickle cell advocate,” in lieu of academic degrees, titles or certifications. This strategy has helped to bridge positional and perceived power/influence gaps. “So often, physicians have the authoritative voice. We want everyone to feel that their voice is heard and feel equally important,” Lawrence says. During the visits to each site, Osunkwo and Lawrence require complete representation by the triad. Osunkwo poses the question, “What are your comments, questions and opportunities around the study?” to all attendees. As each triad member responds, she observes that the teams are finding all the answers to their posed questions within their triads.

The research team also encourages having fun with the theme of engagement. At the initial kickoff conference, site triads received candy “engagement rings”; a subsequent meeting featured a photo booth for “engagement photos” and site triads were presented with certificates formalizing their commitment to the study’s mission.