“People Need to Know; We’re Part of the Community. We’re Here.”: Examining Experiences of Sharing Demographic Information for a Community-Based Diabetes Prevention Program

BackgroundCollecting demographic data is critical for identifying inequities in healthcare services and delivery. Inaccurate collection of demographic data can make developing equitable health interventions and improving reach of existing interventions difficult. This study aimed to (a) examine experiences in completing a community-based type 2 diabetes prevention program Small Steps for Big Changes (SSBC) demographic questionnaire (SSBC-DQ) among adults from equity-owed groups, and (b) assess recommendations for improvement to the questionnaire.MethodsAdults with no prior involvement in SSBC were recruited. Participants completed the SSBC-DQ online and then engaged in one-on-one structured interviews. Interview data was analyzed using interpretive description and coded using the APEASE criteria.ResultsTwelve participant interviews were included in analysis. Five principle themes were developed to capture the experiences of completing the SSBC-DQ: representation, comprehension, demographics are an emotional experience, the role that privilege plays, and beliefs about demographic data. Sixty suggested changes were coded using the APEASE criteria; six suggestions met the criteria for implementation, 20 did not meet the criteria, and 34 required further discussion with the research team.ConclusionsResults from this study illustrate that people's lived experiences can drive their reactions and interpretations to demographic questionnaires. Based on end-user suggestions, SSBC made changes to its demographic questionnaire to be more inclusive. Having a demographic questionnaire that is more inclusive can help SSBC better understand what populations it is and is not reaching in an acceptable and inclusive manner. This will help inform future directions regarding evaluating program reach and equity.