The momentum is decidedly on our side. A gay male professional athlete has come out. America is overwhelmingly in support of same-sex marriage, and the march for legislative approval of our relationships is well underway. And yet, progress is still lagging behind in one of the most important areas of our lives: LGBT health.
But the tide has certainly turned, as some notable advances have recently been made to curb the many health disparities our community faces, including disproportionate rates of certain cancers, smoking, substance abuse, HIV/AIDS, mental health problems and barriers to accessing care.
Marking a critical first step in addressing these shortfalls has been the collection of LGBT health data, which began in earnest on Jan. 1 through the National Health Interview Survey (NHIS) – viewed as the principle source of information on the health of Americans for more than 50 years.
With the inclusion of sexual identity questions in the NHIS, Health and Human Services Secretary Kathleen Sebelius has finally made good on her promise to collect data on the health of LGBT Americans, which will continue through Dec. 31 as part of a supplemental section, the Adult Sexual Identity Questionnaire.
Although inclusion of sexual identity questions in future versions of the NHIS is still not guaranteed, the ripple effect of this initial supplement is expected to drive other federal agencies, state departments of health and researchers, all of which look to the NHIS for guidance on structuring their public health surveys, to follow suit.
In summer 2011, while heads of many LGBT organizations were content that future data collection was a done deal, other advocates remained skeptical when Sebelius spoke of first needing to “market-test” sexual identity questions prior to their inclusion in the survey. Many felt this delay was unnecessary, since sufficient studies had already determined appropriate ways to collect such information. As such, they questioned whether the marginal gain in data accuracy from further question refinement would offset the loss of another two years without data on LGBT people’s lives.
On Oct. 24, 1997, then-HHS Secretary, Donna Shalala, faced an analogous situation, when she mandated “the inclusion of information on race and ethnicity in all HHS-sponsored data collections systems.” Within a week the HHS-wide policy went into effect, covering all federal public health surveys, sans the unnecessary field-testing now required for sexual identity questions. Sebelius could – and some argue should – have done the same; but other forces were at play this time.
In particular, due to concern over the sensitive nature of the sexual identity questions potentially causing reporting bias when collected, many worried that prohibitively expensive requirements, such as the use of audio computer assisted self-interviewing technology to administer such questions, would ultimately prevent their inclusion in the NHIS. Fortunately, the “market-testing” phase proved such requirements unnecessary; but this study could have easily gone the other way. Instead a decision was made to use flashcards to administer the sexual identity questions in lieu of interviewers asking respondents directly.
The main question, posed to respondents at least 18 years old, has two versions depending on whether the individual identifies as male or female.
Which of the following best represents how you think of yourself?
(Lesbian or)* Gay
Straight, that is, not (lesbian or)* gay
I don’t know the answer
Those answering “Something else” or “Refused,” are prompted by further clarifying questions. In its current form, only by answering “Something else” is a question about gender identity even offered. Unfortunately, this structure confusingly entwines sexual orientation and gender, two distinct dimensions of human identity.
The data will be first available to the public through a quarterly release of the raw data in September 2013, covering January through March 2013. The complete 2013 dataset will be released in late June 2014. For those interested, the survey questions and future data can be accessed through the website: www.cdc.gov/nchs/nhis.htm.
Asking these simple sexual identity questions signifies a monumental step forward for the health of LGBT Americans that should be celebrated.
However, our work is not done. We must continue to push for refined data collection in future iterations of the NHIS and other surveys as part of their core datasets.