Tuesday, August 09, 2005

Am I being studied? Nobody asked ME!

I am feeling annoyed today. I went to see the dietitian and diabetes educator, and although things went great with them, I have been wondering about something written at the bottom of my forms. There is a line on the bottom of the form that says "Special Status," and next to that, "Publish." I have seen this before, and in the past it has said, "Study." I have asked what this is about, and I get no answers. It seems nobody knows -- or else I am being put off.

As a social scientist, and a person accustomed to collecting data, it sounds to me as if I were in a study, or being studied, and that the results are going to be published. In anthropology we have a tradition. It's called, "full disclosure." It means that the people who are being studied consent to being studied, that I have told them what the true goals of my research are, and that I protect their identities. I have not consented to being studied nor published. Nothing has been disclosed to me.

UPDATE: I sent an email to my PCP's office, and received back some emails from the nurse (not the person I sent the emails to) giving me the run-around again. At first she didn't understand what I was talking about, and now she is telling me it's probably nothing and not to worry about it. I wrote back and told her to ask and find out. I am not going to accept "don't worry about it." If it's in my file, it's my business.

ANOTHER UPDATE (August 17): I again contacted the nurse at my PCP's office. I told her I was not yet satisfied. She responded that their "MyThedaCare expert" (MyThedaCare is the patient access website) couldn't reproduce the results. She said I need to bring in the form showing the word "Publish" at the bottom. I don't have the form because the diabetes educator took it. I have now sent the diabetes educator an email (also through MyThedaCare) asking her if I could have a copy of the form.

1 comment:

Lei said...

That is bizarre. Even if they were going to anonymize you in any publication, I would think they'd still have to ask for your consent to satisfy human subjects requirements. Hope you figure out what's going on!