example, physicians may be encouraged to use that data to troubleshoot the care they provide, but privacy advocates may oppose making it available for discovery purposes.
Need for Incentives
Andrew Vickers, attending research methodologist in the Department of Epidemiology and Biostatistics at the Memorial Sloan-Kettering Cancer Center, has experienced firsthand the reluctance of investigators to share clinical research data; he described several such instances. In one case, data from the control arm of a trial funded by the National Institutes of Health (NIH) was needed to help design a new study, but the response to his request was “I am not prepared to release the data at this point.” Another time, when data were needed for a meta-analysis of results from trials involving chemotherapy, he was told, “I would love to send you these data but my statistician won’t allow it.” In a third case, Vickers was developing a statistical model for predicting response to treatment for specific patient populations and needed access to a dataset from another NIH-funded trial. 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. In the case of the 10 papers they surveyed, the authors had just published results based on the requested dataset. He questioned how authors could publish a study without having a clean and well-annotated dataset, which could easily be distributed on request. “You have to do this anyway, right?” he said.
Other arguments against sharing data had more validity, Vickers acknowledged. For example, career advancement in an academic setting depends on the ability of investigators to generate publications from data they might have spent years collecting. This concern was raised repeat-