[baxtr]

Thank you. Well, the way I understand it: her treatment history won’t be considered by any other doctor than her own. The reason for that is that she wasn’t part of a proper medical study.

However, I believe there is value in her data. The last days she was treated with an experimental drug. If there was an open database on all cases with treatment history I could have looked into that and get a feeling what to expect. These things often come with huge side effects, so you want to do it only if there is a slight chance.

Also, if this data was collected globally, the number of reference cases would be much larger.

[joshgel]

This is partially true. Her data can't be used willy nilly (sp?). Hospitals and doctors offices can use this data for their internal operations, to improve efficiency, quality, etc and (honestly) profit. They can also use this data in research, but only with IRB approval for exemption from consent. Her data should be protected!

Also, I would add that the data collected for routine patient care is often of significantly lesser quality than that collected as part of organized research studies. This is because in a research study, all patients get the same studies and tests whereas in clinical care, they only get what they need, so there is significant amounts of 'missing' data.

[chii]

> Her data should be protected!

but if it could be anonymized (i.e., the medical data such as blood tests, history of diseases etc disassociated with any names), then wouldn't it make sense to have this data be used for research?

[joshgel]

Definitely, still should require IRB approval and careful study design, limited access to only those who need it, etc

[louden]

Her consent would also be needed.