Sex and Gender Identification and Implications for Disability Evaluation (2024)
Chapter: Part I: Sex and Gender Data Collection and Clinical Practice
Part I
Sex and Gender Data Collection and Clinical Practice
The primary information the Social Security Administration (SSA) has at its disposal for adjudicating disability applications is the applicant’s medical record. Therefore, part of understanding disability for transgender and gender diverse (TGD) people and people with variations in sex traits (VSTs) is understanding how information related to sex and gender identity becomes part of the medical record. The data collection related to these important patient characteristics that takes place—or does not take place—across clinical practice and within various sectors of the health care system impacts the quality of information contained in medical records received by SSA, influencing its ability to adjudicate disability applications from TGD people and people with VSTs appropriately.
In response to questions in the statement of task, the three chapters that form this part of the report focus on current and evolving practices for collecting sex and gender data across the health care system. Beginning with Chapter 2, the committee provides background on the medical definitions of sex and gender, which serve as the basis of self-identification, sex-specific medical evaluations, sex-specific disease risks, and appropriate therapeutic interventions, all of which may be relevant for disability evaluation. Here, the committee offers definitions of key concepts and terms important for understanding sex and gender within the context of clinical medicine and medical records. Next, Chapter 3 examines the substantial benefits of collecting sexual orientation and gender identity (SOGI) data, along with the significant biases and structural barriers that prevent robust SOGI data collection within health care settings. Chapter 4 provides an overview of SOGI
data collection across the health care system, examining the fact that while certain components of the system collect SOGI data for the populations they serve, few federal- or state-level policies are in place that require health care providers or health insurers to record information about patient gender identity or sex recorded at birth, both considered key to documenting the health care experiences of TGD people and people with VSTs. Given that individuals applying for disability benefits from SSA access care from different types of providers and access health insurance in different ways, recognizing these challenges at all levels in the health care system is important to understanding the gaps in SOGI data seen in medical records, including those submitted to SSA as part of disability determinations.
