Health Care Data Sharing Shows Progress

An analysis of the health care data sharing environment reveals great progress, but more work still needs to be done.

Researchers from the Yale Open Data Access (YODA) project examined the data sharing environment, which included Yale Open Data Access (YODA), and the recent international Committee of Medical Journal Editors’ (ICMJE) proposal for sharing clinical trial data.

The findings, published in the New England Journal of Medicine, found progress in complete data sharing is improving, but this transformation of clinical data becoming quickly available to researchers to help speed up medical advances is in the early stages.

“The medical editors of research journals are reminding us that we scientists have a principal responsibility to society and to patients who agreed to participate in our studies,” said study co-author Harlan Krumholz, MD. “The YODA Project demonstrates that, by having researchers quickly share information with those at other organizations, the sky hasn’t fallen and worthwhile independent research projects that could not have been done otherwise are proceeding.”

Study authors provided several key examples of the progress made to date, such as: ICMJE proposed to accelerate the transformation to a culture of open science; the pharmaceutical industry articulated principles that support data sharing; many companies (including Johnson & Johnson) implemented programs to make their data assets available; regulatory agencies, including the European Medicines Agency, are now requiring larger sharing by companies looking to market devices and drugs; and influential organizations, such as the Gates Foundation policy, requires that data underlying published results be made available and open immediately.

“At Johnson & Johnson, we believe sharing clinical trial data advances the science that is the foundation of medicine,” said Joanne Waldstreicher, MD. “As our environment continues to evolve, we are encouraged that more and more stakeholders are adopting policies to allow for greater access to clinical trial data. We believe collaboration among all stakeholders — including industry, academia, patient groups and government – is essential to developing a solution that truly advances science, medicine, and ultimately public health. The ultimate measure of our success will be whether this approach creates a culture of openness on par with those of other scientific disciplines and increases the volume of high-quality medical science.”