Wednesday, April 22, 2009

Counting LGBT People in Health Studies. ACT NOW!

Counting lesbian, gay, and bisexual people in health studies has a relatively short history. And yet, a fairly large number of lesbian, gay, and bisexual people have been identified so far, especially from the California Health Interview Survey (CHIS), and various States have included information on sexual orientation in their Behavioral Risk Factor Surveillance Systems (BRFSS) and Youth Risk Behavior Surveys (YRBS).
But there is no nationally representative dataset that yet captures sexual orientation data, making it very difficult to do the kind of research I am most intereted in - looking at the impact of normative heterosexuality on health. Because most of the studies that do include sexual orientation data happen in States that are relatively friendly (VT, RI, MA, CA, WI, etc.), it is difficult to find a comparison group exposed to higher levels of societal homophobia.

To a small degree, one can use relationship status from the national BRFSS and NHANES datasets to identify sexual minorities, but because these people are by definition in marriages and marriage-like couples, it is unclear what biases play out in becoming a couple, and what impacts this has on health.

So, to do the kind of research I want to do, we need national datasets that ask about sexual orientation identity, not just imputing it from partnership status.

So, is this post totally self-serving? Self-serving, yes, but I wouldn't be the only beneficiary.
Right now, there's no way for people in most of these United States (and her territories, PR, VI, GU, AS, CM) to know whether the trends that have been identified in Massachusetts, Vermont, Wisconsin and California apply to their populations as well.
And because the data would be Federally collected, it would be available to a much broader range of researchers (such as graduate students and people without a huge research funding apparatus behind them), enabling a much broader set of eyes and minds to grapple with LGBT health concerns than has been able to so far.

A question about gender identity has, as far as I know, only been asked in one wave of the Massachusetts BRFSS, and those results have not yet been released. So there's no solid information on the health of transgender people in any State.

Hats off to Senator Sheldon Whitehouse (D-RI) for initiating a "Dear Colleague" letter to ask the Senate to set aside $2M to ask questions about sexual orientation and gender identity on the National Health Interview Survey is a good start. Those questions should be standard questions asked on the National Health and Nutrition Examination Survey (NHANES) and the BRFSS core demographic module as well.

Call your own Senator at (202) 224-3121 and ask them to sign on by calling Jordanna Davis in Senator Whitehouse’s office.

Another place that we should be getting more information is from birth and death records. Vermont does this already, but many of the States with civil union laws do not yet collect this information on standard birth and death certificates. And the National Vital Statistics Sytem should revise its procedures to allow capturing this information from the States that do collect it.

Wednesday, April 15, 2009

How Are You Healthy?

How are you healthy?
A simple enough question.

But there's a lot more going on there than meets the eye.

After yesterday's rant, I felt the need to regain some balance by talking about something really awesome that's happening in the field of public health. The how are you healthy? campaign on and on buses in Chicago, and sponsored by various partners, really hits the spot.

It's real
All the photos are of real guys, who really wrote real things about themselves. There's just something refreshing about seeing actual guys telling you actual things about their actual lives, instead of ad copy printed next to a model. How do I know it's real? Because I know some of the guys who have written in and are shown on the website. That's how.

It's inviting
Unlike most public health campaigns, it's not about fear. It's not about guilt. It's not about putting some unattainable goal in front of you. It's not about telling you what to do, or more accurately, telling you what not to do.
I like to think of it as the perfect antidote to the usual "To Don't" list that we get from public health all the time.
The question - how are you healthy? - invites you to reflect, to celebrate what's going well, to personalize your own answer.

It's outwardly oriented
By putting the campaign on buses in Chicago, the campaign is clearly outwardly focused - not just for gay men, but for the whole city.
Most health campaigns try to 'target' an audience. I don't know about you, but when I feel targeted, my reaction is to duck, dodge, get out of the way. I don't wanna get shot. Or, when I the campaign is targeted at someone else, I breathe a sigh of relief, not my problem, I don't have to worry about it.
The other problem with targeting a message by putting it in the public square is that bus ads, subway ads, billboards, even print ads in gay newspapers are a really lousy way to target an audience - you miss most of the people you want to get, and a whole lot of people get annoyed, including a large proportion of the 'target' audience.
But more about the outward orientation of the how are you healthy? campaign.

gay. sexy. healthy.
The straightforward assertion that the words gay. sexy. healthy. belong together is a radical departure from public health research and practice over the last 30 years. It directly challenges people to question the fast and easy elision between 'gay' and 'sick' or 'immoral'. It challenges the notion that sex is what makes us sick. By starting from the assumption that gay men are healthy, the implication is that everyone can learn health tips from us, gay, bi, and straight alike. Now, if you've been in a yoga class lately, or had a personal trainer, you know that's true already.
By stressing that sexy is healthy, it challenges all those public health messages about cutting back, denying our sexuality.

rant on research
But if you look at the research literature, you could be excused for coming away thinking that gay men are disease-ridden, addicted, and self-destructive. Why? Because that's all that gets published. I've been looking hard, and aside from a paper by Evelyn Hooker in 1957, I haven't been able to find one single example of a quantitative study which starts from the premise that gay men are inherently healthy.
Recently, there's been a lot of attention paid to 'health disparities', usually implying a negative health disparity between a racial/ethnic minority and non-Hispanic whites, but sometimes a negative health disparity affecting women, and occasionally a negative health disparity affecting sexual minorities or gender minorities. I haven't found any examples of a positive health disparity affecting sexual minorities in the literature, but if you've been reading my blog lately, you know I've been finding them aplenty in raw data sets. Which implies one of two things: that researchers are not looking for positive health disparities, or that they are not making it through the peer review process and into print. My hunch is that the former plays a much bigger role, having been through the same indoctrination in public health, I can assure you that it's very hard to turn the paradigm of risk->disease around to begin thinking about positive health outcomes, and harder still to turn around ideas about who's supposed to be sick.
At any rate, the idealistic goal of identifying health disparities is that highlighting how oppressed groups suffer disproportionately will motivate political action to address the social forces causing those disparities.
But by measuring the result (health disparities) and not the cause (social forces) directly, this leaves health disparities research in an atheoretical limbo, results waiting for an interpretation. And as such, identifying health disparities but not directly measuring their causes may serve to undermine the very goal the researchers have in mind. Rather, these atheoretical results, hanging in mid-air as it were become evidence for some that the affected groups are inherently susceptible, inherently weak, and have none to blame but themselves. That these disparities, while unequal, are justified, to be expected, even fair.

back to looking outward
And the other big problem with identifying only negative health disparities is that when there are positive health disparities, there is an opportunity to learn their causes, and to export that knowledge beyond the oppressed minority group into the society at large.
And that's the other thing I love about the how are you healthy? campaign. It's gay men talking to gay men, but anyone is invited to sit in and learn what we have to say, what works, and adopt whatever may work in their own lives as well.

So tell your story. Send in a snapshot. Join the fun.

Tuesday, April 14, 2009

Dissecting the News

All right, I've tried to play nice.
I've tried to focus just on 'Research Worth Reading', because I know that if I spend much time worrying about reporting that drives me nuts, it drives me nuts.

The following paragraph is nothing special. It is ordinary, standard reporting on HIV/AIDS. Which is perhaps a large part of why it is so frustrating.
It is basically a throw-away paragraph in the middle of a recent article in the Miami Herald on a somewhat related topic, but certainly not the main point of the reporting.

"Recent Florida figures show an increase of 48 percent in newly reported HIV cases in Miami-Dade County from 2006 to 2008 and 74 percent in Broward County. This might have occurred because of an enhanced reporting system, said [Spencer] Lieb [, Florida Department of Health Bureau of HIV/AIDS]. Yet, some of the gay population have increased HIV/AIDS complacency, which can lead to riskier sexual behaviors."

So, let me dissect this paragraph, and describe why I find this sort of banal ordinary coverage so infuriating that I can't stand to read anything about gay men's health in the mainstream press, and why over half the reporting in the gay press is equally frustrating.

The reporter notes that there has been an increase in reported cases of HIV in two South Florida counties. Whoa, you may think, why such a large increase, why are there so many new infections in South Florida?
The second sentence gives by far the most likely explanation: that these Florida counties have initiated a program to get more cases of HIV reported - not that there are so many new cases, just that more are being reported to county and state officials. This new program, coupled with the recent encouragement from CDC to do routine HIV testing, probably means that a lot of people who have had HIV for many years, got tested for the first time in the last two years, or got re-tested. And that's why there are so many new tests being reported.
You see the same phenomenon in any community that puts effort into getting more HIV reporting done, and we should expect to see increases in HIV reporting all over the country as CDC's recommendation to test everyone regardless of risk factors gets implemented.

But, the reporter couldn't leave it alone at that. Instead, he went on to find a way to blame gay men for the increase in HIV reports: "increased HIV/AIDS complacency". Why? Why not just keep it simple and to the point - that most likely the increase in new HIV case reports is about reporting procedures, not an increase in new infections. In fact, the reporting of more cases should be cause to celebrate - the main topic of the article is about disclosing one's HIV status to sexual partners. If there are more HIV case reports, then that by extension means more men know their status, and at least have the possibility of disclosing. What's not to love? More people know they are infected, and have the opportunity to use that information to make their lives better.

The first time I heard about gay men "becoming increasingly complacent" about HIV infection was over 15 years ago. I remember because I was among the people who tried to warn the gay community about becoming complacent about HIV.
But after fifteen straight years of becoming more and more complacent (if you believe what you read), one wonders if there is any room to get even more complacent.
It would seem that that gay men must be the most complacent people on the face of the Earth, especially when it comes to getting HIV.

So what's wrong with raising the warning about HIV complacency among gay men? And why is it such an easy scapegoat? A fast-and-ready explanation for any blip in HIV/STD rates that comes across the radar?

To describe someone as complacent (in the context of HIV prevention jargon) implies that they already understand the potential consequences of getting infected with HIV, but just don't care. The dominant narrative about complacency among gay men goes something like this: "I know I might get infected, but I know a lot of guys who are infected, and they look healthy to me. What's so bad about taking a pill every day? At least then I won't have to worry about getting infected any more." It is interesting to note that complacent in the dictionary means something quite different, but that's another story.
So, why this construction of gay men as knowledgable, but unmotivated to protect themselves so appealing?
From the dominant narrative of public health, clothes may make the man on the outside, but choices really make the man. Choices about sex, in this case.
And having choices implies having options. Having options implies having the information to make informed choices. Having information implies sufficient education about choices. And to complete the circle, making healthy choices implies that one values health above other concerns in life.
So, the 'failure' that gay men's supposed complacency highlights out of this network of ideas is that gay men are simply tired of making informed healthy choices.
What are the alternatives? Going backwards through my assertions, it could be that gay men don't value their health above all other concerns in life, implying that we are either saddled with a death wish, or our priorities are so debauched that health takes a back seat to some other need. OK, that's not an appealing picture to paint of gay men (though of course many do take that route, even I'm afraid to say, within our own community).
Perhaps there's a failure of education, that gay men just don't know what their choices are. Well, that implies that either the vast bulk of public health efforts in HIV prevention (educating gay man and others about their "choices") has failed. Whoa, we're not going there! Or, perhaps that gay men are just pain stupid, or naive. Again, kind of a no-starter (although there are plenty of people, even within our communities, who pull out these sorts of explanations regularly).
It could also be that gay men are making unhealthy choices because we're insane, crazy, irrational. Or, as the people who like to rely on these sorts of explanations often prefer to say, that we are so drug-addled that rational healthy choice-making is compromised.

Anyway, you're by now getting the point, that describing gay men as "complacent" about getting HIV is perhaps the least noxious of the explanations driven by the dominant narrative structure of public health.

But that still leaves out what's wrong with constantly describing gay men (or at least some subset of us) as complacent? First off, based on what? Note that there is no reference for the statement in the article, it appears to have just appeared there at the whim of the reporter (or his editor). Second, compared to whom? The implication is that gay men are now more complacent than gay men were in the past (or than men of the same age in years past). I don't know about you, but I don't think I've yet met a gay man who just doesn't give a hoot about whether he gets or has HIV, past or present.
So where are these complacent hordes of gay men?

How else might the reporter have handled this - well, the obvious one would have been to keep it to the point - there was no need to go into new HIV stats in this article. But having gone there, just stick to the most logical, likely explanation, that more tests have been getting done, and therefore more positive results have been coming in. Period. Or, if he really needed someone to blame, how about going after Federal prohibitions on HIV prevention money being spent in a way that might "promote" homosexuality? It's hard to avoid denigrating homosexuality when it's legally prohibited to "promote" it. How about going after "one-size-fits-all" social marketing campaigns that conflate homosexuality with drug use, HIV, and self-pity?
There are so many worthy targets outside the gay community, yet somehow it's easiest to bear the blame ourselves.
After all, we're used to it. Maybe we are complacent after all.