Attack of the Data Suckers
that authors make renewable materials, datasets, and
protocols available to other investigators without unreasonable restrictions. “Blood adheres to the belief
that authors should include in their publications
the data, algorithms, or other information that are
integral to the publication or make it freely and
readily accessible,” the policy states. “Authors should
use public repositories for data whenever possible
and make patented material available under a license
for research use.”3
Can Investigators and Data Analysts
Exist Symbiotically?
Free the Data!
Members of the research community weren’t s hy when it
came to voicing their opinions on data sharing.
Here’s a sampling of some of the responses:
@MadamScientist (Rajini Rao, PhD)
I’d rather be a #ResearchParasite than a #DataHoarder.
@johnquackenbush (John Quackenbush, PhD)
@NEJM forgets neither physicians nor scientists
“own” data. It belongs to patients wanting cures.
#researchparasite
@robin_andersson (Robin Andersson)
#IAmAResearchParasite but I prefer the more
commonly used term “scientist”
@redpenblackpen (Jason McDermott, PhD)
As data sharing becomes more prevalent, differing
views have emerged about what, if any, relationship
needs to exist between those who collect the data
and those who later use it.
The NEJM editors proposed that the best path
forward is a symbiotic relationship between clinical
investigators and data scientists.
Dr. Shaywitz agreed, adding that, ideally, both
sides would work together from the beginning to
form a partnership to take advantage of each party’s
expertise – all the way from study conception
through to its execution. “There should be an elaborate and continued dialogue, because there are a lot
of subtleties to data collection,” he said.
“Not sharing data is
actually a violation
of the promise we
made to patients. ...
You have to weigh
the interests of the
doctors who do the
work against the interests of the public.
The public has to
win.”
—VINAY PRASAD, MD, MPH
Dr. Irizarry also concurred that symbiotic
data sharing is the most effective approach to
repurposing data, but said he doesn’t believe it needs
to be compulsory. “Competition is one of the key
ingredients of the scientific enterprise. Having many
groups competing almost always beats out a small
group of collaborators,” he said, adding that those who
generate the data may not have the time to collaborate
with everyone who is interested in the data.
In his own experience as a trained statistician,
though, he has learned that it is hard to make a
meaningful contribution through data analysis or
method development without a clear understanding
of the scientific problem, which the original investigators most certainly have.
“Most difficult scientific challenges have nuances
that only the subject-matter expert can effectively de-
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scribe,” Dr. Irizarry explained. “Failing to understand
these usually leads an analyst to chase false leads,
interpret results incorrectly, or waste time solving a
problem no one cares about.” Successful collaboration, he believes, involves a constant back-and-forth
between a data analyst and a subject-matter expert,
though the subject-matter doesn’t necessarily have to
be the one generating the data.
Others, like Dr. Hoffman, think data sharing
should occur automatically, regardless of any symbiotic relationship with the original clinical investigator. “It should just be the expectation, and in many
fields it is the expectation that when people publish,
they make the underlying data available,” he said.
Incentivizing Data Sharing
The NEJM editorial set off a Twitter firestorm (see
the SIDEBAR for some examples), with users proudly
declaring #IAmaResearchParasite, but it also shed
light on the larger debate about the concept of open
data sharing and data exclusivity. Is there a happy
medium in sight?
Dr. Shaywitz shared an idea from Bob Wachter,
MD, a professor of medicine at University of California, San Francisco: Unless the scientific community moves away from the moral case for open data
and embraces the business case instead, no true
solution will be possible.
“Practically, you have to acknowledge the realworld incentive that people are operating under,”
Dr. Shaywitz said, adding that, to change behavior,
people first have to understand why data-gatherers
are hesitant to share their data.
One way forward is to institute data-sharing
guidelines. The International Committee of Medical Journal Editors (ICMJE), for one, is seeking
comments on its proposed set of guidelines that are
designed to help foster the clinical trial data sharing
that’s now mandated by an increasing number of
foundations, government agencies, and industries.4
Under the proposed guidelines, researchers
must submit a plan for data sharing as part of
their clinical trial registration and give “substantial
credit” to those who generate and share clinical trial
data. Clinical investigators also would have to share
de-identified individual patient data related to the
results of the submitted article within six months
of publication. (For more about the ICMJE’s
data-sharing guidelines, see “A Deeper Look at the
ICMJE’s Proposal” on page 74.)
Allowing for the data sharing to occur after a
paper is published, though, means that journals will
have limited power in enforcing that rule, according to Dr. Hoffman. “A lot of people will let that six
months pass and do nothing.” In the past, when he
or other colleagues have tried to follow up to gain
access to data, he is met either with no response
or with authors saying the data are not ready to be
made publicly available.
Aside from mandating data be made available
and be attributed correctly, guidelines could also include certain provisions that would incentivize data
sharing, Dr. Irrizarry said. For example, guidelines
could encourage funding agencies and the scientific
community to reward data-generators when their
data are used by others – if the resulting research
was as rigorously reviewed as the original analysis.
Discussing the ICJME’s proposal in a recent
editorial, ASH Clinical News’ Editor-in-Chief
Mikkael A. Sekeres, MD, MS, and Brian J. Bolwell,
MD, noted important caveats to the call to share
May 2016