Has anyone else gotten an email about participating in a "Social Study on Acromegalic Experience," which involves having an ethnography done?
I just got one this morning and was wondering if anyone else has more details.
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Yes, I got that email and called Alex today. Talked with her for quite awhile.
She is with a research company hired by a pharmaceutical company to perform this study.
One thing Alex told me that I found interesting but not surprising, acromegaly is not the first disease this company has done research on but I paraphrase, she has never interviewd any group of patients that are more informed and researched than the acro community is.
I'm always conflicted but believe this study is being performed well. It will be up to the pharmacy on how it is used.
If you are interested call her and get the details. Our stories have to be told and studied. She did listen.
Wow, I'm so proud of us for being informed! I guess we have to be, because the info is so obscure you really have to go searching for it.
I am planning to talk to her this week!
So I spoke to Alex today, and I think I will participate assuming that I am chosen. Some notes from my call with Alex:
-Looking for 12 men and women (I don't know if that means 12 of each or 12 total)
-They would video tape people that they study, but the videos would only be shared with the pharmaceutical company hiring the ethnographers
Alex is going to forward me a blurb to post on this blog.
I am really excited to be part of this study. Its new and different. They seem genuinely interested in learning about acro patients for more than just selling a product.
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