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Saturday, January 23, 2016

Assault on research transparency

We all suffer from various forms of isolation, some of it self imposed. I recently read the book, "The big sort" which identifies how Americans are increasingly self sorting in terms of where they live and with whom they associate. The authors come up with a compelling story about the results of that sort, which is we are increasingly unaware of opposing world views and opinions. The New England Journal recently published an editorial which I can only explain on the basis of scientific isolation. In this editorial, the Editor of the NEJM, Jeffery Drazen expresses reservations regarding data sharing and possible unintended consequences. (NEJM). I have to admit that he raises legitimate questions:
However, many of us who have actually conducted clinical research, managed clinical studies and data collection and analysis, and curated data sets have concerns about the details. The first concern is that someone not involved in the generation and collection of the data may not understand the choices made in defining the parameters. Special problems arise if data are to be combined from independent studies and considered comparable. How heterogeneous were the study populations? Were the eligibility criteria the same? Can it be assumed that the differences in study populations, data collection and analysis, and treatments, both protocol-specified and unspecified, can be ignored?

These are difficult to address issues which should be dealt with in the open! If these issues are part of the original data set upon which conclusions are drawn, all of the readers and consumers of the information should be aware of these potential limitations. Putting such data in the hands of an extended set of interested people should do nothing but add value to the original studies.

He then goes on to state:
A second concern held by some is that a new class of research person will emerge — people who had nothing to do with the design and execution of the study but use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.”
What? Research work requires an investment of time and money, usually lots of each. The product of that investment may be data and from that are derived publications and hopefully some sort of impact on the world. If smart and motivated people can derive additional value from data derived from the original research teams, that is NOT parasitic. Depending upon who funded the research and who owns the data, the original parties may rightfully expect to derive some compensation and expect that they have a right to some portion of that additional value derived from the original data sets.

Obviously no one is going to make huge investments of time and effort to amass data sets only to have them coopted immediately. However, once one puts a publication in the public realm, the data upon which conclusions were drawn should be available to readers of that work.

The concern that the data could be reinterpreted with different conclusions seems frankly ridiculous. That this was published in one of the most prestigious medical journals in the world by the senior editor is outright embarrassing. Who did he have to critique this? He obviously has sorted himself away from necessary and critical peers who should have provided feedback to him and help him recognized the nonsense that this editorial is, before he published it.

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