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Smith - Time for sharing data to become routine: the seven excuses for not doing so are all invalid

Messages
3,263
From the article:

The seven incentives not to share
1. Others will use my data to produce publications without having to go to the trouble of gathering them
2. Other researchers might scoop me
3. I fear my conclusions will not be replicable.
4. Critics analysing the data may come up with different or contrary results
5. Sharing the data may expose horrible weaknesses, flaws, and inconsistencies in the way we coded and stored our data
6. (for those who do research with patients) concerns about patient confidentiality.
7. “technical reasons.”

Patient confidentiality is the reason that authors of a controversial trial on treatment of chronic fatigue syndrome give for not sharing their data, but inevitably they look as if they are hiding something

It seems to me there are still little hints in the article that in the case of PACE its probably okay to withhold the data, because there are legitimate concerns about confidentiality. And no way to address them without contacting all the patients and asking them.
 

barbc56

Senior Member
Messages
3,657
Patient confidentiality, is the lamest excuse used but the one that may be the easiest believed by those who don't know how data is collected and used in a study. Understandably, most people don't know.

The US is obsessed with patient privacy, HIPPA for example. I don't know about other countries.

While the the reasoning for patient privacy in a medical setting is sound, that issue is a far cry from data in a lab.
 

barbc56

Senior Member
Messages
3,657
Not directly related but

http://www.bbc.co.uk/news/technology-36191546?SThisFB

"Google has been given access to an estimated 1.6 million NHS patient records, it has been revealed."

Looks like this is in the UK. I could be wrong but I think it would be illegal here in the states.

ETA Now I'm really confused the article is saying patient names and medical histories will be available yet encrypted. I don’t think you can do both.

Like others, I am puzzled by the kidney injury. Are they talking about injuries from an outside sourse such as a car accident or more likly kidney conditions that can cause damage. Using kidney injuries is rather vague.

I think you can sign something that prohibits releasing your records and if not there should be. I know I signed a paper whether or I wanted my psychiatric records made public within the medical center. I said no to get access to my therapy sessions but yes to the psychiatrist where I go, they don't really do counseling.
 
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Art Vandelay

Senior Member
Messages
470
Location
Australia
I was chatting to some former colleagues recently about the PACE trial and data sharing more generally.

They were horrified by what has occurred with PACE of course. They mentioned that there is a very small (but hopefully growing) push within the bureaucracy here in Australia to ensure that all researchers who obtain public funding for their research make the data that they collect publicly available.

Obviously this is very early days and will require action from politicians eventually, but it's hopefully a small step in the right direction.