Data collection guinea pig -- that's me!

I'm in the Sister Study. If you don't know it, it's a longitudinal study of the sisters of women who have or have had breast cancer. My sister Ms. V. died of complications due to breast cancer in 2002, having been diagnosed four years earlier.

So far I've done the two phone interviews, I've filled out all the questionaires and I've done the seemingly weird things like clip toenail samples and collect dust samples from door jambs in my home (ew!). This morning I was supposed to have a home visit by a technician who would pick up all those samples and forms, as well as collect a urine sample I produced early this morning (ew again!) and draw blood from me. But she didn't show up and there was no answer at the phone number she gave me. I called the Sister Study main number and left a message after waiting on hold for 10 minutes. They haven't called back. When I finally do get in touch with them, I'm sure they'll have to send me a new "Last 24 hours" kit and I'll schedule a new home visit. And I probably should redo the toenail and dust collection steps, too, since I originally completed those way back in March, when I lived in a different home. I then set up a home appointment for May -- the earliest available -- which was then cancelled because they didn't have enough trained technicians in Rust Belt, despite the fact the study works with subcontractors. As it is, the technician who did eventually call me and set up this morning's failed appointment works full time in a local hospital and the reason we had such an early morning appointment was to work around her schedule.

I'm not telling you all this to bitch and moan, or to malign Sister Study. I think it's a fantastic study and I'm happy to stay in it for as long as they need me -- decades even. And I marvel at even the idea that they could collect the amount of data they are collecting and analyze it in any way that's meaningful, not because that can't be done, but because it's just conceptually beyond me. You should see the pages and pages of questions we answer, and that's in addition to two hour-long phone interviews. So many variables! So many potential correlations that aren't causation! It's mind-boggling! More power to the researchers.

But I'm getting the feeling that the study is struggling a little bit with the practical end of things, either to manage an operation of its size, or, just as likely, simply to find and pay the number of people it needs to reach all the participants -- whether it's enough technicians for home visits or operators to answer the phones. Though it's funded by a behemoth like the National Institutes of Health, that's still a government agency, and in the current administration, I wouldn't be surprised to find out that the Institutes in general are woefully underfunded. And this is research science. What's more, it's epidemiological and long-term. There's no immediate "business application" to their findings, and even though anyone with half a reasoning mind knows that there are economic benefits to a healthier populace, and that prevention is a good part of health, and that education is a large part of disease prevention, there's no drug being manufactured here or new surgical procedure with expensive technology to market to hospitals. So it's probably not as well funded, relative to its complexity and the number of people involved, as a basic pharmaceutical study is.

Of course, I don't know this. Maybe it's an organizational management problem. But everyone I have encountered with the Sister Study has been polished and professional and eager to see things works smoothly, so my guess is that there just aren't enough of them to make it work as smoothly as they wish, and that that's a funding problem. It's just an educated guess. But given my own state's taste for funding only that research that has "real world," "practical," and "economic" benefits, and the state's call for universities to turn their collective research interests to "patentable" products,* to be incubators for the state's economic turn-around, I don't think my guess about the federal government's current research funding habits is completely off-base. And my experience in retail and service industries, and in social services, on both sides of counter, so to speak, suggests the people involved in the Sister Study are doing the best they can with what they've got.


*My idea for a patentable, medieval literature-related product is the "Johnny Jouster" (all rights reserved, Dr. Virago). Modelled on the Johnny Jump-Up, the Johnny Jouster helps your young child develop hand-eye coordination, balance, strength, and the ability to win tokens of love from the unobtainable object of his or her heart's desire.