This report was funded in part though OHA, in part through an Oregon Health & Science University-Portland State University, School of Public Health Anti-Racist Faculty Fellowship, and in part through the generosity of the OHSU-PSU SPH Dean’s Office.
Overview: The enclosed report is the result of collaboration between the authors and the Oregon Health Authority. The report synthesizes the thinking and recommendations of the authors about routine data collection of SOGI data in minors for clinical and demographic purposes. Primary motivations to routinely collect SOGI data include: (1) inclusive practice in order to welcome and make space for people from historically excluded genders, sexes, and sexual orientations, (2) to promote health equity between minority and majority SOGI identities, and (3) to direct group-specific services towards those who need them.
Investigation and Findings: These recommendations are informed by (1) interviews with Oregon service providers and advocates for sex, sexual, and gender minority young people, and (2) a literature review to identify existing data sources on Oregon minors, and methods, and recommendations for collecting these data. The literature review yielded alarmingly few evidence-based recommendations for routine SOGI data collection for minors and sparse existing data on SSGM minors. Expertise gleaned from interviews with community advocates and service providers is incorporated throughout the recommendations below. Among considerations included in the report, we highlight the impact of parent/caregiver presence in data collection procedures, the need for cultural specificity in determining appropriate question and response options, individuals’ right to have control over their data, and the value of open vs. structured questions which is dependent on age.
Summary of recommendations: Age appropriateness: How questions should be asked and what response options should be provided may differ depending on the age and understanding of the child:
- For young children (under age 8 or 9) we recommend only using broad, open-ended questions and not involving structured, check-box style questions at all. If structured questions are necessary, we recommend a question that categorizes children’s gendered experiences either in their own words or according to gender conformity or nonconformity.
- For children (ages 8 to 11) we still recommend focusing on open-ended questions, but these can be more specific, including questions about the body, attraction, and self-identifying.
- For adolescents (ages 12+) we recommend that the adult SOGI recommendations should be applied with special consideration given to ensuring that the adolescent understands the limits of confidentiality regarding this information.
Parental/caregiver report bias: To account for parent/caregiver bias in reporting minor demographic information, a flag can be used to identify who data is reported by.
Labor Equity: Because of the labor cost of reporting this data, we recommend that people are asked to fill out these forms no more than once per year. This poses technical challenges. Our recommendation is that a central database or repository is created, which holds demographic information for both children and adults. Healthcare and other service providers as well as researchers would be required to undergo appropriate training for respectful and ethical use of the data would then be able to request individuals’ permission to access their SOGI data from this repository.
Copyright (c) 2022 The Authors
In Copyright. URI: http://rightsstatements.org/vocab/InC/1.0/ This Item is protected by copyright and/or related rights. You are free to use this Item in any way that is permitted by the copyright and related rights legislation that applies to your use. For other uses you need to obtain permission from the rights-holder(s).
Arrigotti, M., Chase, K., Dinno, A. (2022). Preliminary (Year 1) Report to OHA on Pediatric SOGI: Executive Summary. Report to the Oregon Health Authority, Office of Equity and Inclusion