TY - JOUR
T1 - Hearing Norton Sound
T2 - community involvement in the design of a mixed methods community randomized trial in 15 Alaska Native communities
AU - Robler, Samantha Kleindienst
AU - Inglis, S. Meade
AU - Gallo, Joseph J.
AU - Parnell, Heather E.
AU - Ivanoff, Paul
AU - Ryan, Stephanie
AU - Jenson, Cole D.
AU - Ross, Alexandra
AU - Labrique, Alain
AU - Wang, Nae Yuh
AU - Emmett, Susan D.
N1 - Funding Information:
This project was supported by the Patient Centered Outcomes Research Institute (PCORI; AD-1602-34571). PCORI is a mechanism that funds studies that improve outcomes important to patients and prioritizes studies that facilitate patients and stakeholders making better-informed healthcare choices. While PCORI did not have a direct role in the design, analysis, and interpretation of data or writing of the manuscript, it did prioritize and support the community engagement described within. Acknowledgements
PY - 2020/12/1
Y1 - 2020/12/1
N2 - Plain English summary: Community 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. Abstract: Background Effective 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. Methods Community 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. Results Stakeholder 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. Conclusions This 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 registration ClinicalTrials.gov, NCT03309553, First registered 10/9/2017
AB - Plain English summary: Community 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. Abstract: Background Effective 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. Methods Community 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. Results Stakeholder 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. Conclusions This 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 registration ClinicalTrials.gov, NCT03309553, First registered 10/9/2017
KW - Community engagement
KW - Community participation
KW - Community-based research
KW - Indigenous circumpolar health
KW - Randomized controlled trial
KW - Stakeholder involvement
UR - http://www.scopus.com/inward/record.url?scp=85094874208&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85094874208&partnerID=8YFLogxK
U2 - 10.1186/s40900-020-00235-0
DO - 10.1186/s40900-020-00235-0
M3 - Article
C2 - 33292651
AN - SCOPUS:85094874208
VL - 6
JO - Research Involvement and Engagement
JF - Research Involvement and Engagement
SN - 2056-7529
IS - 1
M1 - 67
ER -