Remarkable quantities of data are generated through clinical research, much of which is never published nor disseminated, limiting its integration into current knowledge about treatment efficacy and safety. Some of these data could be used to replicate or extend previous research findings; others could be combined with additional data to enable researchers to analyze the results from a larger number of patients. All of it can be used to address secondary research questions to generate new knowledge. The challenge facing the clinical research enterprise has been to develop a sustainable method for qualified researchers and clinicians to access these data and utilize them to advance science. Sharing clinical data that are already in existence is an efficient use of collective scientific resources and maximizes the valuable contributions of those who volunteer to participate in research.
The Yale University Open Data Access (YODA) Project at the Center for Outcomes Research and Evaluation advocates for the responsible sharing of clinical research data. The Project is committed to open science and data transparency, and supports research attempting to produce concrete benefits to patients, the medical community, and society as a whole. Through experience and input from the public and stakeholders, the YODA Project has iteratively developed a model to make data available to researchers in a sustainable way, in which data sharing becomes a part of the clinical research enterprise of the future. The mission of the YODA Project is to not only increase access to clinical research data, but to promote its use to generate new knowledge.
Click here for an interview with Dr. Harlan Krumholz on open science and the YODA Project.