"I Am Interested!": The Voices of the Community and Their Participation in Health Advisory Boards.

Abstract

Researchers can often be challenged by meaningful efforts to involve the public and communities in research. Community and health advisory boards (HABs) offer an opportunity to create a fully intentional and honest relationship between researchers and the community. Most recently, the All Indiana (IN) for Health HAB had four openings and a call was published to our community of over 13,800 individuals in the All IN for Health newsletter. Four hundred eighty-eight individuals submitted applications to become part of the board. In what follows, we share the lessons in motivations and interests of individuals who responded. The application process included the following questions: What lived experiences and/or personal interests have motivated you to be involved in All IN for Health? Please explain why you are interested in being an All IN for HAB member. Our analysis approach was qualitative and centered on narrative research. We organize the findings in two categories: Motivation and Interests. Individuals were motivated to participate based on family or friend diagnosis, personal diagnosis, roles as caregivers, desire to impact change and advocacy, role as health professional, and previous participation in research. Interests followed similar themes beginning with crediting their interest to a diagnosis. In addition, we categorized desire to share their experience, personal positionality, and previous research experience, and contributing to the education of student/trainee. By understanding motivations, we understand needs. This information can be used for other advisory boards, as well as recruitment into research participation and health care advocacy.