By Dr. Scout
Director of the Network for LGBT Health Equity
At The Fenway Institute
New FDA/NIH Study
The other week at the Institute meeting down in Atlanta, the disparity networks gathered together for our own meeting after all the state reps went back home. First order of business was an update by FDA staff on the latest and greatest there. One of their big new items was announcement of new Tobacco Control Act Longitudinal Study of Tobacco Users. Excellent! But wait, the press release says “… assess differences in attitudes, behaviors, and key health outcomes in racial-ethnic, gender, and age subgroups.” Oh no, we know what that means, sharpen your pens ladies and gentlemen!
Our Response: New Joint Statement on Data Collection
Bam, within a week of learning that news, the Allied National Networks Consortium (aka all six of the CDC funded tobacco disparity networks) had approved a brand new Joint Statement on Data Collection.
Once you cut out the fluff (aka where we say how important it is) we basically say:
“Tobacco related data collection must include:
- Routine demographic measures for sexual and gender minorities, per IOM recommendations.
- Disaggregated data collection for racial and ethnic categories, per IOM recommendations.
- Respondent reported data collection, versus interviewer determined, particularly for race, ethnicity, and sex.
- In language data collection, especially for Latinos, Asian Americans, Native Hawaiians and Pacific Islanders.
- Adequate low socio-economic indicators, particularly parental proxy indicators if it is a youth sample.”
Today The Fedexes Arrive
Then we drafted some cover letters, had every network sign and sent them off to both the head of NIH, Dr. Francis Collins and Dr. Deyton at Center for Tobacco Products at FDA. We look forward to hearing back! And we hope you can use this new Joint Statement on Data Collection locally as well. Feel free to chime in to either party with your thoughts on this issue too!
LGBT HealthLink, The Network for Health Equity 
This is exemplary of engaging and mobilizing allies, in this case your colleagues at the other disparity population networks to advocate for the critical inclusion of all of our populations, including LGBT, in research. With the huge disparity at the intersection of race/ethnicity, socioeconomic status and queer identity, it is unconscionable to leave these communities out of such important data collection.