Question ID: WS-43
Submitted by: Patrick Brown
February 6, 2011
Is there a way to make patient-level data from clinical studies of cancer and other diseases available for re-analysis and meta-analysis without compromising privacy and confidentiality? (eg, by holding it in a public repository that allows identified, credentialed users to carry out re-analyses and meta-analyses without allowing the users to access or glean data on individual patients). Most clinical studies, published and unpublished, do not make the necessary data available in a way that would enable independent re-analysis of the key conclusions, or new analyses or meta-analyses that depend on preserving the linkage of the data relating to each patient. The inability to go beyond the analyses that the original authors of a clinical study choose to carry out and publish, and the inability to pool data from multiple studies for more powerful analyses, represents a huge lost opportunity. The further analyses that would be enabled in this way would substantially increase the payoff from the billions of dollars invested each year in clinical studies.
Average Score: 5.0
 (1 evaluation)Provocativeness - 5.0
Novelty - 5.0
Public Health Significance - 5.0
Feasibility - 5.0
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Comments
Submitted By Jim Brody
This is an excellent idea that could have substantial impact at little cost. The privacy issues have already been tackled. NCI already makes patient level data from cancer registries available for reanalysis and meta-analysis through the SEER program. They have software SEERstat which makes the information available through a client-server model. The researcher can see aggregate statistics without seeing patient level data.
