The Department of Health and Human Services has just made a big announcement: they will begin collecting data on LGBT issues, including transgender issues. The goal is to document disparities in health care, as well as plain old disparities in health, so that they can be addressed in the future. The plan is to have two roundtables on “gender identity data collection” with “key experts” this summer and fall, and then the “Data Council” will present a strategy next spring. The department will also collect public comment in various ways, one being through a website called regulations.gov, which is currently down.
If done right, this could be a tremendous help to understanding transgender issues. “The first step is to make sure we are asking the right questions,” HHS Secretary Kathleen Sebelius told the Washington Post. “Sound data collection takes careful planning to ensure that accurate and actionable data is being recorded.” As I’ve written before, current research on transgender feelings and actions is severely hampered by the lack of any kind of representative sample. Just to give you a quick sense, here are ten very basic questions that nobody knows the answer to:
- How many transgender people are there?
- How common are the various transgender thoughts, feelings and beliefs?
- How common are transgender actions like cross-dressing, body modifications, and “soft mods” like shaving?
- How common are transgender name and pronoun changes?
- How common are part-time cross-living and full time transition?
- How often are sexual activities part of transgender activities?
- How common are diseases and destructive habits among transgender populations?
- How many transgender people are in long-term relationships?
- How often are various subgroups targeted by violence and discrimination?
- How satisfied are transsexuals twenty, thirty or forty years post-transition?
Unfortunately, transgender research is dominated by two camps, the pathologists who make unfounded generalizations based on case studies of their own patients, and the social service providers who make unfounded generalizations based on service recipients, Internet surveys and word of mouth. Neither of them seem to have understood the idea that while convenience samples can provide the basis for many useful existential statements, prevalence statements based on unrepresentative samples are worthless.
At this point it looks like the roundtables will be heavily influenced by social service providers who only pay lip service to the limitations of their research. The Plan says, “While HHS is in the beginning stages of developing data collection on gender identity, many researchers (e.g., Williams Institute at the University of California Los Angeles and the Center for Population Research in LGBT Health at the Fenway Institute) have been working on such data collection for several years.” The Williams Institute produces reports like “Bias in the Workplace” (PDF), an important summary of numerous studies investigating workplace discrimination that repeatedly acknowledges that the studies are based on convenience samples – and then goes ahead and repeats percentage results as though they meant something.
The Fenway Institute employs transgender health advocate Emilia Dunham as a Program Associate, and she also hosted a webinar on the issue. It seems quite likely that she will be one of the experts at the roundtables. But in an otherwise solid article for Bay Windows presenting these changes at Health and Human Services, Dunham uncritically repeated several of these unsupported percentages.
There is a very short list of Experts who I think should be on these Roundtables. The strongest research into transgender issues has been qualitative research: listening, reading and introspection, finding existential statements but not making unsupported claims of prevalence. I’ve said before that the best qualitative researcher in the transgender community is Helen Boyd, author of My Husband Betty. At Helen’s recommendation I’ve also read a few things by Raven Kaldera that have been pretty good, particularly his post on female transvestites (which has somehow disappeared from his website).
There is only one person out there who has ever collected data from a representative sample of any transgender community, and that’s Niklas Långström of the Karolinska Institutet in Sweden. He’s not focused on the transgender community, and he’s associated with the pathologist Kenneth Zucker (who is not someone we want involved), but he does know how to do a national survey, and it would be worth every penny for HHS to fly him over from Stockholm for the Roundtables.
If they can’t get Långström, then I want to be on that Roundtable. I don’t have a degree in psychology or public health, but I did take an elementary course in statistics, and I learned what you have to do in order to make a generalization. But what matters more than any qualification is that I care about doing this right. If they can’t find anyone else who does, I want to be there.
Am I missing anyone? Are you doing quality quantitative research? Please let me know.