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Yeah, it's pretty frustrating. I tried getting my own data from an fMRI study, but was told that the signed paperwork specifically disallowed this sort of thing

by bpchaps 10y ago

Yeah, it's pretty frustrating. I tried getting my own data from an fMRI study, but was told that the signed paperwork specifically disallowed this sort of thing. Not even my doctor could request it. The only option I have is to completely withdrawal myself from the study, but that would be a pretty dick move. The other option is to wait until next year when the study's wrapped and then request it. Though, I'm not even sure if that'll get me the actual data..

dewarrn1 10y ago
I completely agree that this can be frustrating. For what it's worth, the data from a research study aren't necessarily going to be clinically informative to a GP or even to a radiologist. Structural MRI data could potentially be interpreted, but the sequences collected for research are still different than what you'd get if you went in for a clinical scan. And if you're interested in having the data for your own purposes, there may still be some liability concerns for the researchers. There's always an agreement to keep MRI data under strict supervision to avoid leaks of personal health information, so providing those data to participants (safeguards or no) could potentially count as a breach of protocol.
- bpchaps 10y ago
  Agreed on leaking information. It make total sense why they wouldn't want the participants to get access to the data. Though, when I found that out, I did some naive scans to see if they had any public webservers that would have the research information. I didn't see any, but there were a huge number of HIPAA violations where many, many computers with health information were exposed directly to the internet. Their security team told me that it wasn't anything to be concerned about. A HIPAA complaint didn't go anywhere, either. Already spoke with a journalist to try to get some traction on it..
glial 10y ago
I was able to get a copy of my data from a MEG study, supposedly because it was part of my electronic medical record so I was entitled to it. Not sure whether that was sound reasoning, but it got the result I wanted.
moptar 10y ago
There's a science reason for denying participants access to their own data. For example, if you suspect you might have some brain anomaly, you might enroll in the study as a healthy person hoping to use it as a free way to get a brain scan. People doing that would distort the sampling.
ihnorton 10y ago
FWIW, typical raw fMRI data is mostly useless unless you know the design parameters of the study (stimulus timing, imaging onsets, etc.). Though there are some interesting data-driven analyses techniques, especially for resting-state data. Many research studies in the U.S. are required to do "structural" scans (high-resolution T1 or T2) and send them to a safety read by a radiologist, for liability reasons. At very least, this scan should be available directly from the hospital imaging department. If you are lucky all the data will have been sent through the hospital PACS and the imaging department will indiscriminately dump everything. At a research-only center it might be more complicated because such images are likely sent off-site for the safety read.
- bpchaps 10y ago
  Right, they did actually give me the surface scan. It was really, really cool, though with really low resolution. What got me interested in getting the data was this: [1]. It might be difficult to work with, but there was a lot of motivation to learn it. [1] http://nbviewer.jupyter.org/github/GaelVaroquaux/nilearn_course/blob/master/rendered_notebooks/1_Introduction.ipynb http://nbviewer.jupyter.org/github/GaelVaroquaux/nilearn_cou...
- deleted 10y ago
  [deleted]

by bpchaps 10y ago

dewarrn1 10y ago

I completely agree that this can be frustrating. For what it's worth, the data from a research study aren't necessarily going to be clinically informative to a GP or even to a radiologist. Structural MRI data could potentially be interpreted, but the sequences collected for research are still different than what you'd get if you went in for a clinical scan. And if you're interested in having the data for your own purposes, there may still be some liability concerns for the researchers. There's always an agreement to keep MRI data under strict supervision to avoid leaks of personal health information, so providing those data to participants (safeguards or no) could potentially count as a breach of protocol.

bpchaps 10y ago
Agreed on leaking information. It make total sense why they wouldn't want the participants to get access to the data. Though, when I found that out, I did some naive scans to see if they had any public webservers that would have the research information. I didn't see any, but there were a huge number of HIPAA violations where many, many computers with health information were exposed directly to the internet. Their security team told me that it wasn't anything to be concerned about. A HIPAA complaint didn't go anywhere, either. Already spoke with a journalist to try to get some traction on it..

glial 10y ago

I was able to get a copy of my data from a MEG study, supposedly because it was part of my electronic medical record so I was entitled to it. Not sure whether that was sound reasoning, but it got the result I wanted.

moptar 10y ago

There's a science reason for denying participants access to their own data. For example, if you suspect you might have some brain anomaly, you might enroll in the study as a healthy person hoping to use it as a free way to get a brain scan. People doing that would distort the sampling.

ihnorton 10y ago

FWIW, typical raw fMRI data is mostly useless unless you know the design parameters of the study (stimulus timing, imaging onsets, etc.). Though there are some interesting data-driven analyses techniques, especially for resting-state data. Many research studies in the U.S. are required to do "structural" scans (high-resolution T1 or T2) and send them to a safety read by a radiologist, for liability reasons. At very least, this scan should be available directly from the hospital imaging department. If you are lucky all the data will have been sent through the hospital PACS and the imaging department will indiscriminately dump everything. At a research-only center it might be more complicated because such images are likely sent off-site for the safety read.

bpchaps 10y ago
Right, they did actually give me the surface scan. It was really, really cool, though with really low resolution. What got me interested in getting the data was this: [1]. It might be difficult to work with, but there was a lot of motivation to learn it. [1] http://nbviewer.jupyter.org/github/GaelVaroquaux/nilearn_course/blob/master/rendered_notebooks/1_Introduction.ipynb http://nbviewer.jupyter.org/github/GaelVaroquaux/nilearn_cou...
deleted 10y ago
[deleted]