Posted by: rhoban | June 30, 2010

Linking Scientists and Community members…

… to fight HIV.  It’s not as easy as you might think.

Writing about a process can be difficult… precisely because it’s a process .  There’s not a lot of action per se.  That’s unfortunate, though.  Because processes are important.   And Durham needs this process of figuring out the best ways to arrest the spread of HIV. What’s more, a surprising number of people really aren’t sure of the best ways to prevent HIV. A survey done in POZ magazine – a publication aimed at people living with HIV – found 34% of readers cited the lack of HIV education as the main reason they contracted HIV.

You can listen to today’s story here:

NC HIV Disease Rates, 2008

As of the end of 2008, Durham ranked number 3 in the state for HIV acquisition (figure right) with about 36 out of every 100,000 residents coming up positive for the virus. The statewide rate is 22 people per 100,000.

What’s more, the rate for black males is 113.6 new cases per 100,000 people, for black females, it’s 50.7 cases (PDF). So, the black community in Durham should be clambering for someone to study how to prevent HIV transmission, right?

Maybe not.

I remember once hearing a presentation at the American Public Health Association conference about researchers from the Texas Department of Health trying to study kids who lived downwind from a lead smelter. A lead smelter for  Pete’s sake… spewing lead-filled smoke into a poor Latino neighborhood!! Shoulda been a no-brainer, right?

Yet, the families of these kids didn’t want to participate in the study.  Why? They’d been studied to death, they hadn’t gotten feedback, they felt used and felt like they’d been poked and prodded … and for what?

For the black community, there are also the echoes of Tuskegee.  I don’t think whites appreciate how much the Tuskegee study echoes throughout the African American community.

I certainly didn’t until a few years ago, when I did a story on end of life care in the black community, and interviewed Tonya Armstrong, a clinical psychologist.  She talked about doing focus groups with UNC students to ask about their attitudes to research:

By and large, the African American students were much less likely to participate [in medical research] and they  named Tuskegee – as young as they were – as the reason. Meanwhile, the white students at UNC were generally  unaware of Tuskegee.

So these young people who had not even been born yet, when Tuskegee was going on, they pick up these vibes from their communities and we  still have ongoing difficulty in [the research] community for people to recognize that building trust is not something you can do in an in-and-out maneuver, you have to be there, and show your self in a predictable, consistent behavior and it doesn’t matter what you look like.

That distrust continues today and is exacerbated by, our… inability to really demonstrate those long-term relationships with members of our community.

It seems like it’d be obvious to researchers: involve the folks you’re studying into the research process. But it’s surprisingly common that researchers don’t do that. .  Part of that could well be the pressures of research on a timeline – you have a 3-year grant, say, and getting nuanced information across to people takes time that often feels like a luxury. Part of that is certainly a level of academic arrogance. But part of it is definitely the cultural divide between the PhDs in academia, who’ve spent their lives with their noses in a book… and the rest of us folk.

That’s something that makes LinCS 2 Durham somewhat unique.  They’ve got a grant that allows them to engage in this process.  Essentially, the process is the research.  And they have 5 years to do it.

I had an opportunity to go to one of the meetings of the working group – the Collaborative Council (through a consensus process, they asked me not to tape the proceedings.  Instead, I took notes).

At that meeting, they were combing through the language of the community survey they’ll be debuting later this summer.  Comments came up about how perhaps language about HIV was negative: “why not frame an HIV+ neighbor in a more positive light?”  They also worked on how to get at the stigma that surrounds sex, talking about sex, men who have sex with men, and the stigma of having HIV.  It was a lively – and sometimes loud discussion – and insightful.

That’s because the room was populated by lots of academic-types, but there was also a hospital social worker there, Rev. Rhonda Royal Hatton (quoted in today’s story), her friend Wisdom Pharaoh (a spoken word artist/ poet who’s also the head of the residents’ council at MacDougal Terrace), an HIV-positive gentleman who identified himself as ‘no one special’, a couple of students… in short, a mix of folks to give input on how to get the word out on HIV prevention.

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