Why we screen.

[rivka]

We've started running subjects for our study on coping and immune function in HIV. Because we're asking a lot of our subjects, and because we're trying to make the study as clean and rigorous as possible, we have a long list of inclusion/exclusion criteria. We've currently rejected about twice as many people as we've actually enrolled.

And a good thing, too. For example, here are two conversations I had today.

Young man: Can I find out about what you're doing here?

rivka: We're doing a study on how people cope with HIV, and how that might affect their immune systems - which is the part of your body that fights the virus. We're asking people to come in twice every six months for three years. When you come in, we'll ask a lot of questions, take samples of your blood and spit, and do something called the "Body Reactions Test," where we hook you up to a machine that reads your blood pressure and ask you to talk about something emotional. So if that sounds like something you might be interested in, then I want to ask you some questions to see if you qualify.

Young man: Sure, go ahead.

rivka: Okay, are you a patient at this clinic?

Young man: No.

rivka: You're not?

Young man: No, I'm just here escorting a friend.

rivka: Do you have HIV?

Young man: No, I got tested six months ago and I'm negative.

rivka: Actually, our study is only for people with HIV.

Young man: [looks shocked and betrayed] Really?

[much later] Young man corners Rivka in the waiting room and asks: Hey, is that the only kind of study that you all have?

rivka: Yes, all of our studies are about HIV. This is an HIV clinic.

Young man: [sounding quite offended] Damn.


Second conversation, this time with a woman who smelled strongly of alcohol:

rivka: Have you ever used heroin or cocaine?

WHSSOA: Yes, I have.

rivka: When was the last time?

WHSSOA: A couple months ago.

rivka: [pinpointing the time is important, because we exclude people who have used in the past 90 days] So, has it been since Christmas?

WHSSOA: I don't know. I don't think so.

rivka: How about since Thanksgiving?

WHSSOA: Yeah.

rivka: Okay, actually, for our study you need to be clean for longer than that.

WHSSOA: It was just one time. I'm on methadone.

rivka: I understand, and maybe in a couple of months, if you haven't had any other slips, you could give us a try again.

WHSSOA: Actually, it's been much much longer than that. It's been a very long time.

rivka: I'm sorry, you really just don't qualify for the study.

WHSSOA: I'm on methadone. Look, they give me take-homes. You think they'd do that if I was using? [removes vials of methadone from pocket and waves them around.]

rivka: Thanks for coming by.

WHSSOA: Look, I was just telling you what I thought you wanted to hear.

rivka: You thought that, if you hadn't used recently, I wouldn't let you into the study?

WHSSOA: Yeah. You know how it is.

rivka: Well, I hope you can see that I have to go by what you said. And also, I need people in the study who are going to tell me the truth, and not tell me what they think I want to hear.

WHSSOA: It was just going to be this one time. Just to get in.

rivka: Thank you for being interested in our study. Let me get that door for you.

WHSSOA: [goes out, cursing me under her breath]



This is why I tell our research assistants, repeatedly, "No one has a right to be in our study. We're not providing a treatment that it would be unfair to deny people access to. So, even if someone passes the exclusion criteria? If they're a big enough jerk that you don't want to have to deal with them every six months for the next three years, go ahead and reject them."

Although sometimes it's sad that the converse isn't true. Like the very sweet, likeable woman who told me, with justifiable pride, that she'd been clean for ten weeks - I hated having to tell her that it wasn't good enough. It seemed as though she was on a path that was hard enough already without a stranger telling her she didn't measure up. But maybe in a couple of months, she'll come back and enroll.

Comments

[therealjae.livejournal.com]

Look, I was just telling you what I thought you wanted to hear.

Damn. 'Science'. I do not think you know what it means.

-J

[dglenn.livejournal.com]

"Patients lie." -- catchphrase of Dr. House on the television series House. (Not helpful, no; just that a mental image of the actor delivering that line popped into my head when I read this.)

[therealjae.livejournal.com]

I really need to see this show sometime.

-J

[tikva.livejournal.com]

Yes, you do. It rocks.

[patgreene.livejournal.com]

Are people trying to get in because of some sort financial compensation? I have tried out for studies that I thought would be interesting and involve a minimal expenditure of effort for the money (and, since I have a good chunk of free or flexible time, I am better able to fit them into my schedule than someone with a 9-5 job). Otherwise, it just makes no sense to me. But I would never lie to get into a study.

[rivka.livejournal.com]

We pay $10 cash per visit. Which wouldn't be enough incentive for you to lie, I'm sure, but it's a lot of money to our patient population.