The need for a Electronic Lab Notebook

Some of the problems in medical research could have been avoided had we had a proper electronic trail for any inquiry into possible misconduct.

From the top of my head, there are a few things a electronic paper trail should include (possibly more):

• Material received, put to storage, removed from storage, transferred, shipped, etc.
• Experiments performed, for what project/study, with what materials, in what lab, with which equipment, by whom and with what results (e.g. Western Blots, EM images, Antibody titers, Gene Sequences and so on)
• Results received from third parties
• Patient/Control samples should be coded ("blinded") by default
• The person who does patient/control sample coding
• The time of code-breaking for each sample
• Any corrections to the record (with before/after record)

Of course everything must be recorded with a time-stamp. And all materials (reagents, patient samples, and so on) must have a machine readable label.

The entire electronic paper trail should be kept at the lab and updates be send regularly (Weekly? Or better daily?) to a central storage (e.g. NIH).

Access to the study-relevant electronic paper trail at the central storage (including records from third parties) should be made available at the time of submission for peer-review to the editors/reviewers.

Parts (at least) of the electronic paper trail relevant to the published paper should be made available as supporting online material.

In case of a formal inquiry the entire electronic record of the lab (and third parties) for the time under inquest should be available to the inquiry board.

Dude, where is my vocabulary?

Just a short observation:

One thing I have noticed how utterly inadequate my vocabulary is, when I try to describe my daily problems to any of the doctors I have seen so far.

Now I may lack training the fine art of being a patient, but what I notice is that my doctors did not display much expertise in inquiring about these kinds of symptoms. Yeah, I have "unrefreshing sleep". Yeah, when I finally get up in the morning my muscles "ache" and feel "stiff". Yeah I feel "fatigued" even before I do something. Yeah, I have "a bit" of "short breath" when I actually do physical activity.

I tried once to convey to a doctor the impact these problems have on my life. Doctors don't like alarmism, I had to learn. Only people with visible disease signs are allowed to state that they are severely impacted by disease, it seemed to me.

Since then, I try to be dry and factual, but lacking a nuanced vocabulary, I get the feeling my doctors don't receive the message I have to transmit. And that they don't ask questions to get the nuances that are missing – e.g. "How strong is the shortness of breath?" or "How unrefreshing is your sleep?" – and don't offer anything in the way of nuanced vocabulary is a bad sign.

I guess one could talk about pain for hours – dull pain, diffuse pain, focal pain, burning pain, just a little pain, feeling like being crushed – but for symptoms related to fatigue? No such luck.

This is a problem that needs to be addressed.