Exception From Informed Consent Community Consultation Surveys-Do Respondent Characteristics Accurately Reflect Targeted Communities?

Abstract

Background: Community consultation (CC) is crucial for exception from informed consent (EFIC) trials. Digital marketing platforms offer a novel and efficient way to gather community input through surveys. This study aimed to determine if the demographics of digital CC survey respondents align with those of their targeted communities.

Methods: We deployed an EFIC CC digital survey for Pedi-PART, a multicenter study on paramedic airway management in critically ill children. A seven-item survey, developed to gauge community perspectives on emergency care research and the trial, was disseminated through a digital marketing platform (Qualtrics Inc.). The survey targeted adults aged 18-65 residing within the geographic service areas of 10 participating EMS agencies. We determined community demographic data from the 2022 American Community Survey (ACS) for the dominant county in each service area. We compared survey respondent demographics (age, sex, race, ethnicity, household income, education) with those of the corresponding communities.

Results: We received 6630 completed surveys (528 to 913 per community). The proportion of individuals over 35 years old was similar between survey and community populations (67.1% vs. 66.5%). Survey respondents were more likely to be female (60.0% vs. 50.9%) and report household incomes < $100,000 (77.5% vs. 60.2%). Survey respondents were less likely to be Black, American Indian, Pacific Islander, or other race (33.9% vs. 52.1%), Hispanic ethnicity (15.3% vs. 34.9%), or have at least a high school education (23.2% vs. 34.9%). Demographic differences between survey respondents and communities varied across the 10 communities.

Conclusions: Demographic differences may exist between digital survey respondents and their targeted communities. Study teams should account for these factors when utilizing such platforms for EFIC CC.

Keywords: community consultation; demographics; digital marketing surveys; exception from informed consent (EFIC).