Translation to plain English of NEJM clarification on data sharing

Previously: Translation to plain English of selected portions of Longo and Drazen's editorial on data sharing

Drazen JM (2016) Data sharing and the Journal. New England Journal of Medicine. doi:10.1056/NEJMe1601087

We want to clarify, given recent concern about our policy, that the Journal is committed to data sharing in the setting of clinical trials.

People somehow misinterpreted our previous editorial as being against data sharing. Weird. Maybe it was the part where we said people who analyzed other people's data can be thought of as "research parasites". I mean, we put it in quotes to make it clear that we aren't necessarily saying that. It's just that some people said it and we thought it was definitely worth highlighting in our editorial. We'll be sure not to use that term again, including to clarify or apologize.

As stated in the Institute of Medicine report from the committee on which I served and the recent editorial by the International Committee of Medical Journal Editors (ICMJE), we believe there is a moral obligation to the people who volunteer to participate in these trials to ensure that their data are widely and responsibly used.

Look, just because we talked about "parasitical" researchers who "steal productivity" from other labs doesn't mean we're not supportive of this behavior. We meant "thieving parasites" as a compliment.

Journal policy will therefore follow that outlined in the ICMJE editorial and the IOM report: when appropriate systems are in place, we will require a commitment from authors to make available the data that underlie the reported results of their work within 6 months after we publish them.

Although the status quo of non-enforced commitments to sharing data after publication doesn't seem to work that well (see also Krawczyk and Reuben, 2012; Punewska, 2014; Vines et al., 2014) and is difficult to enforce, we'll stay with this policy.

I mean it's not like anyone else has any new ideas!

In the process of formulating our policy, we spoke to clinical trialists around the world. Many were concerned that data sharing would require them to commit scarce resources with little direct benefit.

Science is all about direct benefit. (Except for when we ask people to review manuscripts for us...that is an act of service and it's worth doing because it helps the field.)

Some of them spoke pejoratively in describing data scientists who analyze the data of others.

Some of the people we talked to spoke pejeoratively in describing scientists who analyze the data of others. For example calling them "data scientists" as if they are a separate class of scientist. We're not saying we agreed with these pejorative sentiments, but we did think they were worth emphasizing. Apparently not one of the people we talked to was positive about data sharing or I'm sure we would have mentioned it. Which is weird, given the active open science community in science and medicine. Oh well.

To make data sharing successful, it is important to acknowledge and air those concerns. In our view, however, researchers who analyze data collected by others can substantially improve human health.

While we were at it, we thought it would be a good idea to list all of the concerns we heard about data sharing without critically evaluating them or offering rebuttals.

We need your help to move medicine forward and improve patient care. Our enemy is disease.

Please stop tweeting about #researchparasites.

By working in collaboration, as we have suggested, biologists, data scientists, and clinical trialists can advance the art, and everyone will gain.

Everyone will gain, but the best way to gain is "collaboration", which is code for making sure the original authors co-authors on any new manuscript.

Clinical trial data are some of the highest quality data in medicine. They should be used responsibly and extensively to help alleviate suffering. We believe that we will all benefit most if this is done collaboratively, but the Journal’s data sharing policy will apply in all settings.

Hm, I wonder if "responsible" use means extensively consulting the original authors and adding them to the new manuscript?

Just to be clear, we haven't taken back anything we said about research parasitism, stealing productivity, or the concern that new analyses might "even use the data to try to disprove what the original investigators had posited" (the horror!). It's just that, officially, clinical trial data should be shared per our policy. We were careful not to mention any other data which get published in the Journal.

References

Krawczyk M, Reuben E (2012) (Un)available upon request: field experiment on researchers’ willingness to share supplementary materials. Accountability in Research 19:175–186. http://dx.doi.org/10.1080/08989621.2012.678688

Punewska, M. (2014). Scientists have a sharing problem. The Atlantic Monthly. Available from http://www.theatlantic.com/health/archive/2014/12/scientists-have-a-sharing-problem/383061/

Vines, TH et al (2014) The availability of research data declines rapidly with article age. Current Biology, 24, 94–97. http://dx.doi.org/10.1016/j.cub.2013.11.014