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Table 2 Descriptions of stakeholder engagement, participation, and involvement in each trial design area, Hearing Norton Sound community randomized trial (2017–2020)

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

Design Area Groups Involved Descriptions of Involvement
Research question development -Lead Audiology Stakeholder
-Lead Surgeon Stakeholder
-Lead Hospital Administration Stakeholder
-Lead Education Stakeholder
-Communications Outreach Specialist
-Lead Parent Stakeholder
-Scientific Team
• Observed systemic weaknesses in the processes of identifying and treating children with hearing loss.
• Agreed upon the legitimacy of researching an intervention.
• Identified school hearing screenings and referrals as processes to measure.
Comparators for screening processes -Lead Education Stakeholder
-Teachers
• Requested that the selected intervention screening process prioritize affordability and ease of use.
Comparators for referral processes -Scientific Team
-Alaska Stakeholder Team
• Identified potential weaknesses of the standard primary care referral pathway, built intervention telemedicine specialty referral pathway.
Unit of Randomization -Scientific Team • Proposed randomization.
-Lead Audiology Stakeholder
-Lead Surgeon Stakeholder
-Communications Outreach Specialist
-Lead Parent Stakeholder
-Lead Patient Partner
• Advocated for screening processes to not be randomized, but standardized for all participants. Advocated for referral pathways to be randomized at the community, not individual, level.
-Communications Outreach Specialist
-Lead Parent Stakeholder
• Guided scientific team through forming strata for referral pathway randomization based on geographic and sociocultural considerations across the 15 participating communities.
Choice of Outcomes & Measures -Lead Hospital Administration Stakeholder
-Lead Audiology Stakeholder
-Lead Surgeon Stakeholder
-Scientific Team
• Determined measurements for the primary outcome and some of secondary outcomes, including sensitivity and specificity of the school and mHealth screenings.
-Lead Education Stakeholder • Directed scientific team to use AIMSweb test scores, the standard for academic benchmark assessment within Bering Strait School District.
-Communications Outreach Specialist
-Community Members at large
-Lead Parent Stakeholder
-Lead Patient Partner
-Lead Audiology Stakeholder
• Facilitated development of a region-specific addendum to the hearing quality of life measure (HEAR-QL).
• Developed measures to address the sensitivity of the sociodemographic survey, including an informational cover sheet.
Telemedicine Protocols -Community Members at large • Responded with mixed preferences about being present for a child’s initial follow-up appointment. Some parents preferred to be there; others preferred not. Both of these preferences were built into the intervention process.
-Lead Audiology Stakeholder
-Village-based Healthcare Providers
-NSHC Village Health Services Administration
• Built new workflows for telemedicine cases to be completed by CHA/Ps; developed processes for scheduling and blocking CHA/P availability.
Participant Recruitment & Retention -Communications Outreach Specialist • Designed and led all the social media, announcements, flyers, and communication to communities. Assisted with in-person communication and enrollment and collaborated with the schools to help disseminate and collect forms.
-Lead Education Stakeholder • Provided essential leadership with recruitment throughout the school district, emphasizing the value of the study in contributing to students arriving to the classroom ready to learn.
-Lead Parent Stakeholder • Participated in and assisted with community events and focus groups. Provided insight as a parent, a patient, and a community member, and assisted with communications to members of the community about the project. Reviewed and edited media blasts before their release and provided input during weekly meetings during the recruitment phase.
-Community Members at large
-Lead Audiology Stakeholder
• Provided real-time feedback that encouraged the use of FM radio, VHF radio, Facebook, flyer, and word of mouth forrecruitment. Offered input on decisions about location and format of public forums, or focus groups.
-School staff • Collaborated with team in order to get necessary paperwork in place for children participate in the study.