Thursday, March 16, 2006

Mediocre care

The Barre-Montpelier (VT) Times Argus reports on a study published in the most recent issue of the New England Journal of Medicine that says we are are all getting mediocre medical care. Because of the study's importance, NEJM is making the entire text available online for free, so you can click the link and read away.

The short version is basically this: while there may be striking disparities in access to health care, once someone gets into care, there are fewer disparities among various demographic groups, whether defined by gender, ethnicity, or economic level. The real disparity in this situation is between the quality of care given and the current standards of care for any given medical condition. In general, everyone, pretty much across the board, is getting substantially less than the optimal standard of care.

Why?

Health experts blame the overall poor care on an overburdened, fragmented system that fails to keep close track of patients with an increasing number of multiple conditions.

What to do?

Quality specialists said improvements can come with more public reporting of performance, more uniform training, more computerized checks and more coordination by patients themselves.

Me, I don't know the answer. However, that last phrase--more coordination by patients themselves--struck a chord. One thing that has distinguished the HIV epidemic since the beginning (as we know it) has been the role that the individual patient has played in his/her own health care. People with HIV have consistently been involved in their care, from demanding more research to demanding that their physicians participate in that research to learning the hard words that go with the hard realities of AIDS and partnering with their physicians (no matter how reluctant the physicians may have been to become partners) in making treatment decisions.

Consumer involvement in HIV care is more than something to be proud of--it's a "tradition" that has saved lives. The epidemic has changed, however. I see changes in advocacy, in provision of services, in public attitudes. Everywhere the tendency is toward complacency, and, in recent years, there's a greater sense of powerlessness.

So here's my question(s): How's that working out? Are the hard won victories of the past slipping away? Is the old model of paternalistic health care being recreated by passivity in the presence of an array of treatment options? And where does that leave us in meeting the standard of care for HIV? Just asking.

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