> This kind of data is likely more complicated because it's really hard if not impossible to anonymize the actual patient-level data. It still should be as accessible to other scientists as possible.
I disagree with both parts of this. Why not associate each patient with a number then log all data against that? Patient names and other identifying information should simply never be attached to trial-related data (except for in a well-protected lookup file with highly restricted access).
Making scientific data accessible only to other scientists is highly anti-scientific. Feynman, one of the greatest scientists of all time has many quotes around exactly this mindset:
"Have no respect whatsoever for authority; forget who said it and instead look at what he starts with, where he ends up, and ask yourself, 'Is it reasonable?' ... we will doom humanity for a long time to the chains of authority, confined to the limits of our present imagination. It has been done so many times before."
"Science is the belief in the ignorance of experts"
"Our freedom to doubt was born out of a struggle against authority in the early days of science. It was a very deep and strong struggle: permit us to question - to doubt - to not be sure. I think that it is important that we do not forget this struggle and thus perhaps lose what we have gained."