Engaging patient’s in the research process is essential as it creates self-awareness, increases a collective understanding of needs and views, and allows for active participation in healthcare decisions. This stakeholder driven project aimed to develop a patient-centered research model to identify stakeholders of type 1 diabetes (T1D) for addressing the needs of patients and families in rural communities. From project inception, investigators used an innovative approach of incorporating stakeholders in the entire research process. A four-step engagement plan using the Methods in Community-Based Participatory Research for Health guided the project. In the first strategy, assessment of both personal and institutional capacities for active collaboration was completed. Specifically, the project lead (researcher, healthcare provider, and mother of a child with type 1 diabetes), caregiver, and advocacy organization executive met to discuss strengths and weaknesses and how to effectively collaborate. Next, identification of potential partners ensued with new and established networks, associations, and community leaders. We completed this step through years of networking and becoming involved within the community. Reframing the ultimate health issue for research was the third strategy. This was a dynamic, interactive process guided by a diverse group of stakeholder perspectives across two states in the development of a patient-centered research plan. Finally, developing and nurturing the sustained partnerships established between researchers and community partners was accomplished in strategy four. Specifically, the team developed a group process contract that allowed for fluctuation to meet individual and group needs. These relationships were built through sustained T1D community presence and networking. This shared decision-making process resulted in trust, accountability, and stakeholder empowerment while ensuring that individual’s voices were heard.


V.D. Jewell: None. A.A. Abbott: None.


Patient-Centered Outcomes Research Institute (10443-CU)

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