Raymona Lawrence, E-SCA (left) and Ifeyinwa (Ify) Osunkwo, E-SCA are co-principal investigators for a PCORI-funded project, which will help identify how best to support emerging adults with sickle cell disease during transition by comparing peer support plus use of organized education protocols in the clinic against using organized education protocols alone, and how effective each approach is in reducing ED visits and admissions and in improving quality of life.

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.

The ST3P-UP Study

Engagement Definition: The process of working collaboratively with varying entities who care a whole lot about adults and adolescents with sickle cell. Partners are deeply and truly involved in all aspects of the study and are committed to sustained efforts to make individuals with SCD transitioning from pediatric to adult care happier and healthier.

Engagement Purpose Statement: To ensure that we collaboratively empower, motivate, and contribute to the quality of life of emerging adults with sickle cell disease (EA-SCD) to create a foundation for successful transition. This study will provide them with the comprehensive tools to be effective advocates, leaders, and champions for their individual well-being and community engagement.

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. 

Advice for Others

  • Be flexible and willing to adjust your strategy as needed to engage community partners most effectively; avoid a one-size-fits-all approach. 
  • Understand the nuances of your community partners and how research works within their unique context. If you cannot translate the research to their environment, you’re not going to survive in community-based participatory research.
  • Remember that everyone brings something to the table, especially those who are considered “lay”. Nothing for us…without us.
  • Bring the heart of the research to the everyday work. When patients describe their transition experience it helps bring the research to life.
  • Consider creative, fun ways to engage your research partners to work towards common goals.

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