Map of life expectancy at birth from Global Education Project.

Wednesday, June 08, 2005

What I do for a living

I use a pseudonym here because I want freedom to speak in a voice that is not exactly consistent with my professional role. And in fact, I realize that I have written rather little about the issues I deal with every day, in my real life. I probably should let folks know something about that.

First, I work as evaluator for some federally funded programs in substance abuse treatment, mental health services for people living with HIV, and HIV counseling and testing. An evaluator doesn't give a report card or tell the funder that a program is successful or unsuccessful. Rather, we collect information about programs and clients that helps the program staff meet client needs, and helps funders think about the best ways to support programs in the future and the kinds of program models to fund. I try hard to appreciate the views of both clients and providers, and to serve as a bridge between their worlds.

The federal government once was committed to actually solving social problems -- the philosophy expressed in Lyndon Johnson's Great Society, and actually carried on by Richard Nixon who by today's standards was, in domestic affairs, a liberal. That is no longer true. We are left with pilot projects, demonstration projects, capacity building -- that means that organizations receive funding for 3 to 5 years, then they have the rug yanked out, leaving the clients on the floor. For example, one program of the federal Substance Abuse and Mental Health Services Administration, called the HIV and Mental Health Services Collaborative, funded 20 programs nation wide. In 15 months, that money will go away. People with HIV have very high rates of emotional distress and psychiatric morbidity. A study of middle aged and older persons living with HIV in New York City and Wisconsin found that 27% had thought about suicide in the prior week. A study of HIV seropositive women found that 38% reported needing mental health services in the prior six months. A study I did found that, among Latino men and Latina women living with HIV in one city, a history of mental illness and reported psychiatric symptomatology was associated with an extraordinarily high rate of a history of homelessness -- among women, 80% had been or were homeless. Some - but not all - of these clients will qualify for Medicaid once the federal funding runs out, but even that will pay only for a part of what they need.

Another area where I work is in health policy, particularly as it relates to racial and ethnic disparities in health and health care. Although the Clinton administration established a national goal to eliminate disparities by 2010, we are nowhere near meeting that goal, we will not meet it, and in many respects, we are not even making progress. Since we know that the federal government is no longer interested in pursuing the goal of health equity, the coalition I work with is concentrating on state policy. But as a colleague of mine said, here in New England, we live in a blue bubble. We have a chance to make significant gains at the state level, but those states where the inequalities are the greatest are politically much less receptive to addressing them.

Finally, I study physician-patient communication and relationships, the therapeutic alliance, and how people understand and take care of their own states of health and illness, as compared with the theories their doctors use. There is a big gap. I study these issues both qualitatively -- through observational and ethnographic research -- and quantitatively. I have developed a system for coding and analyzing communication which parses speech into separate dimensions of interaction process (or social exchange), and topic or informational content. In a few weeks, I will begin work under an NIH grant to fully develop and implement this system in a study of communication about taking HIV medications.

When I first started this blog, I thought that I would write mostly about these issues. Everybody is interested in their own relationships with physicians, and while most people like and trust their doctors, communication is often not fully satisfactory. And of course, for a lot of people, relationships with doctors go obviously and painfully wrong sometimes.

Unfortunately, the world has intruded very forcefully. It is hard to concentrate on these matters, as important as they are, while disaster overtakes the country I grew up in and to which, by heritage and identity, I belong. Nevertheless, I do plan to try to pull Stayin' Alive back on topic, where I hope I have something special and unique to offer. Not that I won't still address matters that I feel compelled to talk about, that are highly salient, or just interesting or fun. But there are plenty of effective general political ranters out there, I don't want to be just one more.

Please let me know what you are interested in, if there is anything you would like me to discuss, or if you have questions I might be able to answer.

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