Principles and Obstacles for Sharing Data from Environmental Health Research Workshop Summary (2016) / Chapter Skim
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5 Possible Ways Forward
5 Possible Ways Forward
Pages 69-82
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From page 69... ...
Hopefully, studies will not be looking at the data from 20 years ago without taking into consideration new data sets that have enriched the original data set." Lynn Goldman, dean of the Milken Institute School of Public Health at George Washington University, noted that when raw data are released, they are generally not completely raw. Instead, they have been cleaned up to a certain degree.
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From page 70... ...
Francesca Dominici, a professor of biostatistics and senior associate dean for research at the Harvard University School of Public Health, agreed with Daston that the field of environmental health needs these tremendous quantities of data if it is to keep advancing. "In environmental health, we do not have low-hanging fruit anymore," she said, mentioning the early work on the connection between smoking and lung cancer as an example of such low-hanging fruit, since the effect is so large that it is relatively easy to find.
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From page 71... ...
"I do not think science is advanced by reanalyzing data sets," she said. "Science is advanced by people replicating studies in different situations with different populations that are completely independent." "I think we are kidding ourselves," she continued.
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From page 72... ...
I think that a common language for environmental health would foster the interoperability of databases and promote the sharing, reuse, and reanalysis of data and therefore, hopefully, accelerate the pace of discovery." Several workshop participants commented that the definitions that Goldman had offered earlier for "reanalysis," "replication," and "reproduction" (see Chapter 2) were good ones and should be promulgated.
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From page 73... ...
"I know our investigators have huge concerns about premature release of data or premature demand for release of data before [they are] fully analyzed," she said, adding that by "fully analyzed" she did not mean that the investigators had extracted every implication from the data that they could but, rather, that the investigators examined the data thoroughly enough to be comfortable that they were reasonably error free and ready for analysis by other parties.
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From page 74... ...
Thus, unless early data sets have been transferred into more recent forms of storage, researchers might not be able to access them. The second issue is that federal policies do not require data from scientific studies to be stored for a particularly long time.
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From page 75... ...
Sometimes OSHA [the Occupational Safety and Health Administration] loses, and sometimes they do not." While acknowledging that he did not know whether there would be any way of easing tensions, Greenbaum suggested that one way of easing tensions would be to "construct rules of engagement that promoted a level of civil discourse that enabled people to actually produce quality science, have it challenged by scientists no matter who they worked for, but in a scientific manner, have dialogue and opportunity for dialogue, and then in the end know something more than we did before as a result of that." Greenbaum said that the reanalyses of the Six Cities Study data that his group did had some of those characteristics, so he recognized the value of such scientifically based challenges, but, at the same time, he also recognized that it is not feasible to carry out such reanalyses for every single study that a government agency supports.
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From page 76... ...
Providing Incentives to Share Data Hal Zenick of EPA stated the need to develop metrics to measure data sharing. "If you look at the baby boomer cohort," he said, data sharing "is a foreign concept.
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From page 77... ...
Thus, Greenbaum suggested that if the federal government provided data enclaves for the sharing of data from federally funded studies, it could lay out the same sort of user agreements, and if a user broke the agreement and breached the confidentiality of people whose data were in the data set, the same sort of federal penalties, which are up to $250,000 or 5 years in prison, or both, could apply. "That would help protect privacy." OVERALL REFLECTIONS During the Session 5 discussion, workshop attendees provided reflections on the workshop as a whole.
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From page 78... ...
Another example is the Fitbit, a device that keeps track of a wealth of activity on the people who choose to wear it, such as daily activity patterns and levels, calories burned, sleep patterns, and weight. 2 "Best Practices for Preparing Environmental Data Sets to Share and Archive" is available at http://daac.ornl.gov/PI/BestPractices-2010.pdf (accessed February 22, 2016)
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From page 79... ...
We have been placing ourselves in a position where therefore Congress or others are trying to impose things to take care of this." She noted that it can be particularly challenging to engage the environmental health community in issues like this. "Quite frankly, we [environmental health researchers]
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From page 80... ...
I am not sure that ensuring excessive and complete access to data sets is the way forward to reach that goal most consistently and expeditiously. I think there are paths forward that we could think about and certainly ones where we can learn from other disciplines." In particular, she suggested, the model that should be kept in mind is evidence-based medicine.
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From page 81... ...
." Silbergeld stated, "[this] is where I come back to this issue about the respect that we owe our subjects in environmental epidemiology -- a respect that is in danger of being taken away." Silbergeld then discussed how one should go about carrying out a systematic review in environmental health.
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From page 82... ...
I do not think you need the raw data tables." There may be particular cases in which there are reasons that the raw data are needed, she said, "but in the general evaluation of both toxicologic and epidemiologic data, I do not think we need them." Silbergeld stated that the larger goal of maintaining a steady supply of data through new innovative studies should be kept in mind when individuals choose to gather data from researchers. She worries that some of the actions that she heard talked about in the workshop could make it less likely that the supply of important new data will continue unabated.
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