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Sharing Clinical Research Data Workshop Summary (2013) / Chapter Skim
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3 Barriers to Data Sharing
Pages 19-26

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From page 19...
... Despite the widely acknowledged benefits to be gained by sharing research data, significant barriers to sharing remain to be addressed. Several speakers described these barriers, and others mentioned them in 19
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From page 20...
... When patients are asked to share their information, are given a voice in that process, and are thanked for their participation, they are more likely to choose to share health information, she said. A good deal of legal uncertainty exists regarding privacy regulations and the associated impacts on data sharing, said Geetter.
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From page 21...
... "This made sense when you were looking at dusty paper medical records," Geetter noted. "It does not make as much sense, in my view, when you are talking about electronic data that may never be at the covered entity's premises to begin with" because the data may be in an electronic health record held by a vendor who uses cloud computing services.
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From page 22...
... Despite providing the investigators with numerous reassurances, including that the data would be used only for a statistical methodological study, that the paper would explicitly state that no clinical conclusions should be drawn from the analysis, that the data would be slightly corrupted, and that he would send a draft of the paper to the investigators and give them veto power, "We never heard back from them," he said. Among the explanations Vickers received for refusal to share data was the cost and trouble of putting datasets together, typified by the comment, "I would love to help you, but it would take too much time." Vickers labeled this argument as unacceptable.
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From page 23...
... Despite the journals' data-sharing policies, which require authors to share their raw data, only 1 of the 10 requested datasets was received (Savage and Vickers, 2009) , indicating that additional incentives or enforcement mechanisms are necessary to change the culture surrounding data sharing.
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From page 24...
... For example, consent forms provide exhaustive detail about expectations and obligations for participants in clinical trials. Data-use agreements, terms of use, and other contracts provide differing ways of ensuring ethical management of research.
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From page 25...
... "Let's move it into health research." One way to encourage openness is to stay grounded in traditional research ethics. The 1978 Belmont Report, subtitled Ethical Principles and Guidelines for the Protection of Human Subjects of Research, referred to respect for persons, beneficence, and justice (HEW, 1979)
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From page 26...
... . "If we wait to see what we can do after the fact, it is very difficult." He was involved in one study in which the investigators sought to repeat the analyses of microarray expression studies published in Nature Genetics using the datasets deposited with the papers (Ioannidis et al., 2009)
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Key Terms

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  • trust relationships
  • sharing data
  • affects data
  • data using

  • data generated
  • keeping data
  • surrounding data
  • promoting data
  • systematic data

  • implementing data
  • sharing research
  • affect data
  • data standards
  • raw data

  • disseminate data
  • data prior
  • mandate data
  • human research
  • allows sharing


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