Document Type

Report

Publication Date

6-15-2023

Subjects

Sexual minorities, Gender identity, Medical care -- Research, Equity

Abstract

Executive Summary

The report synthesizes thoughtful recommendations of the authors to the Oregon Health Authority (OHA) about routine data collection of SOGI† (sex, sexual orientation, and gender) demographic data in minors for clinical and reporting purposes. We see five primary motivations to routinely collect SOGI data, including to:

  1. create an inclusive practice in order to welcome and make space for people from historically excluded genders, sexes, and sexual orientations,
  2. promote health equity between minority and majority SOGI identities,
  3. direct group-specific services towards those who need them,
  4. represent the actual diversity of Oregon, and its communities, and
  5. shift normative expectations about who Oregonians are.

Our approach
These recommendations are informed by:

  • interviews with Oregon service providers and advocates for sex, sexual, and gender minority (SSGM) young people,
  • a literature review to identify existing data sources on Oregon minors, and methods, and recommendations for collecting these data,
  • a focus group with SSGM teens, and
  • a survey of US states’ SOGI data practices as reflected in major health surveys. 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. The literature review yielded alarmingly few evidence-based recommendations for routine SOGI data collection for minors and sparse existing data on SSGM minors.

Summary of recommendations (detailed in full in the report)
Recommendations for children based on age: Questions and the response options should 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.

Recommendations to limit parental/caregiver report bias: To account for parent/caregiver bias in reporting minor demographic information, indicators can be used to identify who is disclosing the data about a minor, and who is present when data are collected.

Recommendation to limit administrator report bias: Add an option to indicate the question was not asked (e.g., ‘□ Did not ask question’) in order to account for instances in which a survey administrator did not ask the question, and to avoid conflating these instances with passive non-response, or active non-responses such as Prefer not to answer or I don’t know what this question is asking. Such a question could be used to identify administrators routinely not asking SOGI questions, and could also be used as a flag for follow-up with a respondent. This question could also be added for REALD.

Recommendation to provide expanded prompts and definitions: Provide generously detailed prompts (similarly to REALD’s prompts for open text responses) to all SOGI questions, and provide definitions for each of the categories in structured questions.

Recommendations for labor equity and a centralized demographic repository: Due to the labor cost of reporting demographic data (let alone, for example, screening, treatment or symptom questionnaires), we recommend that people are asked to fill out demographic forms no more than once per year. This poses technical challenges. We recommend a central database or repository be created, which holds demographic information provided and managed by both children and adults. For example, a minor might change their preferred pronoun or gender identity using a web page to interface with the database. To offset the reporting burden, healthcare and other service providers as well as researchers would be required to undergo training for respectful and ethical use of the data prior to requesting permission to access their SOGI data from this repository. Individuals should be able to access their own data. A centralized demographic data database would dramatically reduce the burden of changing legal documentation of a person’s name, sex, gender, race, ethnicity, etc., which is frequently mentioned as a stressor or barrier to care for SSGM minors and their families (as well as SSGM adults).
We recommend that SOGI demographic data be collected routinely among minors in Oregon in contexts where REALD data are collected.

Recommendations about restricting access to SOGI data: We recommend that service providers who wish to access historical SOGI data (that is the history of changes to an individual’s demographic information, including REALD), and who have obtained patient consent to do so, be required to document the reason for accessing such information and that institutions are required to review the validity of these reasons. Requiring service providers to document reasons for accessing historical demographic data serves as a checkpoint to help ensure patient data is being used safely and ethically but is not dependent on a prescriptive list of what uses of data are legitimate.
Because Oregon law (OR 109.650) does not guarantee minors a right to confidentiality, nor does it guarantee parents/caregivers a right to access their children’s information, where possible we recommend service providers guarantee that minors over age 12 must give permission for their information to be shared, even with parents/caregivers. When such a guarantee is not possible, we recommend that the collection of SOGI data include an acknowledgment that confidentiality is not guaranteed and that providers are trained to recognize situations when it is or isn’t appropriate to share this information.

Recommendations about mandatory training
For accessing current SOGI data: We recommend workers and institutions who interface with minors should not be able to access SOGI data unless they have been trained on using the data respectfully. We recommend OHA develop and disseminate brief training materials around SOGI data use.
For accessing historical demographic data (including SOGI): We recommend OHA create and disseminate training materials for institutions and individuals who desire to access historical demographic data (i.e. across the life course of the individual).

Conclusion
Collecting inclusive SOGI data is a public health good and a moral necessity, and has the potential to benefit individuals as well as population health. OHA’s draft SOGI data tool is, in our judgement, the most inclusive of all U.S. states among the tools we considered, and could play an important role as a model of inclusive routine SOGI representation for minors nationally countering SSGM erasure and distortion in other states.

See also: Preliminary (Year 1) Report to OHA on Pediatric SOGI: Executive Summary. Report to the Oregon Health Authority, Office of Equity and Inclusion

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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).

Persistent Identifier

https://archives.pdx.edu/ds/psu/40321

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