a disservice to the LGBT community. She also noted that in designing questions, it is important to consider whether the questions will be asked in a provider’s office or by a field survey interviewer.
Over the past decade, the National Center for Health Statistics (NCHS) has used a number of different questions to collect data on sexual identity in a variety of surveys, and the data are inconsistent across these surveys. The result, said Miller, is a distorted picture of what is happening within the lesbian, gay, and bisexual community. In a 2002 survey that used the terms heterosexual, homosexual, and bisexual to refer to sexual orientation, lesbians were identified as the most obese group of sexual minorities. In contrast, a 2006 survey that used the terms “straight or heterosexual,” “gay or lesbian or homosexual,” and “bisexual” found that lesbians were the least obese group.
To develop the sexual identity questions for the NHIS, Miller and her colleagues conducted seven cognitive tests involving 377 cognitive interviews. They also conducted a number of quantitative studies and examined a variety of different surveys that used some variation of a sexual identity question. These studies showed that LGBT people answer questions from a different perspective than non–sexual minority individuals, and that this difference stems in large part from the fact that non–sexual minority people are unfamiliar with the terms used in the questions. Based on these findings, the NCHS revised the questions designed for the NHIS based on three principles. First, use labels that respondents use to refer to themselves. Second, do not use labels that respondents do not understand. Third, use follow-up questions to meaningfully categorize “something else” and “don’t know” answers. Following these principles, the NCHS developed the sexual identity questions listed in Box 5-1.
She noted that though the second question includes a transgender option, this is not meant to be a transgender question. Rather, it is meant to address the complex relationship between gender and sexual identity. In closing, Miller said that this set of questions successfully categorized all but a few respondents, and that these questions will be included in the next NHIS.
The California Health Information Survey (CHIS) is an omnibus, multilingual, public health telephone survey of 42,000 to 56,000 California households conducted biannually since 2001 and continuously since 2011. CHIS has included sexual identity questions since 2001 and gender of sexual partner questions since 2003. The questionnaire development process, explained David Grant, involves multiple stakeholders organized into an advisory board, technical advisory committees, and both ad hoc and topic-specific workgroups. The general rule with CHIS is to never write new questions but to use questions from other well-established surveys. One caveat is that questions designed for data collection using registration forms or patient portals can be difficult to use in a phone survey, so questions are often adapted for that particularly medium, as well as to account for the linguistic diversity in California. Extensive testing and training and ongoing monthly monitoring of live interviews completes the process.