Hearing Norton Sound: community involvement in the design of a mixed methods community randomized trial in 15 Alaska Native communities

Research Involvement and Engagement

Heather E. Parnell¹  Alexandra Ross²  Susan D. Emmett³  Samantha Kleindienst Robler⁴  Cole D. Jenson⁴  S. Meade Inglis⁵  Alain Labrique⁶  Nae-Yuh Wang⁷  Joseph J. Gallo⁸  Stephanie Ryan⁹  Paul Ivanoff^1,10 

[1] Center for Health Policy and Inequalities Research, Duke University, Durham, NC, USA;Center for Health Policy and Inequalities Research, Duke University, Durham, NC, USA;Department of Head and Neck Surgery and Communication Sciences, Duke University School of Medicine, Durham, NC, USA;Center for Health Policy and Inequalities Research, Duke University, Durham, NC, USA;Duke Global Health Institute, Durham, NC, USA;Department of Head and Neck Surgery and Communication Sciences, Duke University School of Medicine, Durham, NC, USA;Department of Audiology, Norton Sound Health Corporation, Nome, AK, USA;Department of Audiology, Norton Sound Health Corporation, Nome, AK, USA;Center for Health Policy and Inequalities Research, Duke University, Durham, NC, USA;Duke Global Health Institute, Durham, NC, USA;Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA;Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA;Departments of Biostatistics and Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA;Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA;Hearing Norton Sound, Anchorage, AK, USA;Hearing Norton Sound, Unalakleet, AK, USA;

关键词: Indigenous circumpolar health;    Stakeholder involvement;    Community participation;    Community engagement;    Randomized controlled trial;    Community-based research;   

DOI  :  10.1186/s40900-020-00235-0

来源: Springer

【 摘 要 】

glish summaryCommunity involvement is important in good research practice. We led a community-based study to improve early detection and treatment of childhood hearing loss in rural Alaska. This study evaluated a cell phone-based hearing screening process and compared a new telemedicine specialty referral pathway to the standard primary care referral pathway. The study included community involvement, engagement, and participation from the very beginning to inform how to best design the trial. We obtained insight and feedback from community members through involvement of a core stakeholder team and through community engagement and participation in focus groups and community events. Feedback received through community involvement and participation influenced the design of the trial at key decision points. Community member guidance shaped the research question, the outcomes to be measured, and the procedures for completing the project, such as participant recruitment. This study offers an example of community involvement, engagement and participation that could be mirrored in future research to maintain the interests of participating communities.AbstractBackgroundEffective systems for early identification and treatment of childhood hearing loss are essential in rural Alaska, where data indicate a high prevalence of childhood ear infections and hearing loss. However, loss to follow-up from school hearing screening programs is pervasive. The Hearing Norton Sound study was a mixed methods community randomized controlled trial that was developed to address this gap. The study engaged community members and participants in the design of the trial, including involvement of stakeholders as collaborators.MethodsCommunity engagement and participation in research design occurred through focus groups and through the integration of stakeholders into the study team. Representation was cross-sectoral, involving individuals from multiple levels of the school and health system, as well as community members from each of the 15 communities. Feedback obtained between April 2017 and August 2017 informed the final design of the randomized trial, which began enrollment of children in October 2017 and concluded in March 2019.ResultsStakeholder involvement and community participation shaped the design of specific trial elements (research question; comparators; outcomes and measures; telemedicine protocols; and recruitment and retention). Community involvement was strengthened by the use of multiple modalities of involvement and by the positionality of lead stakeholders on the study team.ConclusionsThis study highlights the effectiveness of multifaceted stakeholder involvement and participation in the design of health research conducted within Alaska Native communities. It offers an example of involvement and reporting that could be mirrored in future research in order to protect and further the interests of the participating community.Trial registrationClinicalTrials.gov, NCT03309553, First registered 10/9/2017

【 授权许可】

CC BY