5 ms·

The real takeaway lesson from this research should be the vital importance of Open Data to the modern scientific enterprise: > "lamentable archiving and data-s

The real takeaway lesson from this research should be the vital importance of Open Data to the modern scientific enterprise: > "lamentable archiving and data-sharing practices" that prevent most of the discipline's body of work being re-analysed. Keeping data private before publication is (at this point in time) understandable. Once results are published, however, there is no excuse for not depositing the raw data in an open repository for later re-evaluation.

toyg 10y ago
Uh, where would you store it though? IIRC from the time a relative was going through a chemistry PHD, they produced several GBs of raw data every half hour. Storage is cheap but it's not that cheap...
- pas 10y ago
  Even storing - and making accessible - a fraction of it would be a drastic improvement over the current status quo.
- tansey 10y ago
  It's not that much data. You're storing about 2M voxel image every 2s or so. There are open repositories out there already: https://openfmri.org/ https://openfmri.org/
- zachrose 10y ago
  But how expensive was the lab and the instruments that produce that amount of data?
  - jballanc 10y ago
    Not to mention the researchers' and post-docs' and students' time. By not paying to store it, you're risking the possibility that all of this money is essentially flushed down the toilet by a software bug because it cannot now be reanalyzed.
    - nerdponx 10y ago
      Think of the flipside: by paying to store it you are paying to run the risk that your research will be invalidated.
      - 50CNT 10y ago
        Whilst the incentives are all wrong in this situation, that's a good thing, right?
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.
e12e 10y ago
This is medical data. "Open repository" and "medical data on individuals" doesn't really mix well. Ask the next person denied health insurance based on an open access fmri scan (Just to name the most basic/trivial example). In fact, "simpler" things like heart rate etc, are not so simple, as mixed with other factors that are needed for control, such data can be surprisingly hard to meaningfully anonymize. I'm not saying we should give up on open medical data, but it is definitively different from eg: open data regarding a physics or chemical experiment, material science etc. [ed: There's of course projects to collect data, but limit access - in that sense it can be "open" but one would need permission approval to work with the data. There are many such projects, like for Norway, for questionnaires and similar research: http://www.nsd.uib.no/personvern/om/english.html http://www.nsd.uib.no/personvern/om/english.html - research that uses standard clauses for possible re-use is also available to be combined with new studies and meta-studies. Often these data are only available in aggregate and/or anonomyzed form.]

toyg 10y ago

Uh, where would you store it though? IIRC from the time a relative was going through a chemistry PHD, they produced several GBs of raw data every half hour. Storage is cheap but it's not that cheap...

pas 10y ago
Even storing - and making accessible - a fraction of it would be a drastic improvement over the current status quo.
tansey 10y ago
It's not that much data. You're storing about 2M voxel image every 2s or so. There are open repositories out there already: https://openfmri.org/ https://openfmri.org/
zachrose 10y ago
But how expensive was the lab and the instruments that produce that amount of data?
- jballanc 10y ago
  Not to mention the researchers' and post-docs' and students' time. By not paying to store it, you're risking the possibility that all of this money is essentially flushed down the toilet by a software bug because it cannot now be reanalyzed.
  - nerdponx 10y ago
    Think of the flipside: by paying to store it you are paying to run the risk that your research will be invalidated.
    - 50CNT 10y ago
      Whilst the incentives are all wrong in this situation, that's a good thing, right?

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.

e12e 10y ago

This is medical data. "Open repository" and "medical data on individuals" doesn't really mix well. Ask the next person denied health insurance based on an open access fmri scan (Just to name the most basic/trivial example). In fact, "simpler" things like heart rate etc, are not so simple, as mixed with other factors that are needed for control, such data can be surprisingly hard to meaningfully anonymize. I'm not saying we should give up on open medical data, but it is definitively different from eg: open data regarding a physics or chemical experiment, material science etc. [ed: There's of course projects to collect data, but limit access - in that sense it can be "open" but one would need permission approval to work with the data. There are many such projects, like for Norway, for questionnaires and similar research: http://www.nsd.uib.no/personvern/om/english.html http://www.nsd.uib.no/personvern/om/english.html - research that uses standard clauses for possible re-use is also available to be combined with new studies and meta-studies. Often these data are only available in aggregate and/or anonomyzed form.]