Thanks for sharing a professional insider perspective. But wouldn't any other researcher who obtains the data from doctors who recruited the patients have to give credit to the doctors who shared their data? Isn't that a much better professional reputation to have than the reputation of doctors who refuse to share data?
Just in the last two weeks, the International Committee of Medical Journal Editors proposed new rules[1] about sharing clinical trial data. Commentators think that kind of data sharing is a very good idea.[2] As a reader of medical research who has heard a lot of "war stories" about the medical research process from family members who have observed that process at first hand, it seems to me that having more eyes on each data set is nearly always a good idea.
Sharing the data doesn't get you promoted in academia. Writing papers where you repeatedly mine the hand-crafted-over-20-years dataset does. If you give your dataset away for free, you're destroying your only way to advance in academic medicine.
What we need are alternative funding models for academic medicine. With all the negative press and ethical issues from pharma funding the studies, and the NIH cutting their funding, publish or perish is even more important if you want a sliver of a chance to get some of the remaining grant money.
So I guess the concern "that data sharing would require them to commit scarce resources with little direct benefit" is just a pretext then. Obviously, just putting some data up on a website is cheap.
It is cheap, but how do you measure that? There's no impact factor or associated journal publication.
Since simply providing the data can't be measured for tenure or fit into a line item on a CV, academia as a whole assigns it zero value. This then means that simply sharing data is a huge net negative given the high costs of acquiring it.
I am not a doctor. But I come from a family of doctors.
Patient privacy aside, I do agree with you and with the critics of the New England. Science is about reproducable experiments, and in medecine, because of the constraints on the "research material", most studies are on the edges of statistical significance, and with professionals that aren't trained statisticians.
"But wouldn't any other researcher who obtains the data from doctors who recruited the patients have to give credit to the doctors who shared their data?"
In academia, it's better to be the primary author of a paper. More primary author publications makes it easier to get funding, keep your job and advance your career. If you share the data that you might have spent a lot of time and money collecting, you will either gain a citation or a non-primary author position. This is worse for your career. I don't like the system. Most academics would prefer to share to have their work verified or even to see what others might find but the incentives are to keep it private so that you can squeeze as many primary papers (or papers from your research group) as possible out of a data set before sharing the paper.
Just in the last two weeks, the International Committee of Medical Journal Editors proposed new rules[1] about sharing clinical trial data. Commentators think that kind of data sharing is a very good idea.[2] As a reader of medical research who has heard a lot of "war stories" about the medical research process from family members who have observed that process at first hand, it seems to me that having more eyes on each data set is nearly always a good idea.
[1] http://annals.org/article.aspx?articleid=2482115
[2] http://www.statnews.com/pharmalot/2016/01/27/proposal-data-s...