Perspectives and experiences with equitable data collection in oral health: a qualitative investigation

Abstract

Background: Although there has been progress in recent years, oral health data collection processes are still generally not inclusive of all people. This phenomenological qualitative study explores equitable oral health data collection in the United States by interviewing individuals often excluded due to race, ethnicity, language, disability, sexual orientation, and gender identity. The purpose of this study is to explore challenges related to equitable data collection in oral health research.

Methods: A phenomenological qualitative approach was utilized which included a convenience sample of individuals with varied demographic backgrounds and engaged in population health efforts to improve access to oral health. Focus groups and semi-structured individual interviews were conducted virtually. Thematic analysis was used to explore the data. Rigor and trustworthiness were added through team check-ins, memo writing, audit trail, and member checking.

Results: Focus groups (n = 6 groups; 20 participants) and in-depth interviews (n = 3 participants) were comprised of interview participants. Four common themes were identified: challenges with access to oral health care, accurate identification of study participants, intersection of demographic descriptors, and suggestions for improving equitable data collection.

Conclusion: Oral health data collection processes do not always allow individuals to describe what they perceive as important aspects of their identity. Through this qualitative exploration, study participants shared challenges and provided suggestions for improving oral health data collection that allows for more accurate identification of research participants. Based on these interviews, we recommend oral health researchers provide multiple response options, allow research participants to ‘select all that apply,’ and provide open-ended text boxes for respondents to provide additional detail as needed.

Supplementary Information: The online version contains supplementary material available at 10.1186/s12903-025-06388-2.

Keywords: Accurate representation; Data collection; Dental care access; Equity; Participatory research oral health.