Information Liberation: How Data Sharing Drives Medical Innovation

Adam Clark, Ph.D., Director of Scientific and Federal Affairs, FasterCures

Expert panelists shared their thoughts on best ways to encourage pre-competitive data sharing for research from the vantage point of public sector, private sector, and nonprofit organizations. The panel was among the more than 150 panels at the Milken Institute’s Global Conference. They outlined areas of opportunities for collaborations to accelerate research and development timelines for drug and diagnostic development that would result in significant cost reductions for drug development.

“We [drug companies] compete in the marketplace on products. We don’t compete on science. We don’t compete on clinical endpoints,” said Garry Neil, corporate vice president, Corporate Office of Science and Technology, Johnson & Johnson.

With the expansion of genomics, the science of biomedicine itself is transitioning toward biomedical computational informatics and a systems understanding of biology.

Anna Barker, consultant, Transformative Healthcare Initiatives and former deputy director of the National Cancer Institute, noted that “every patient is different. But every medical record doesn’t have to be,” highlighting the need for a standardized approach to collecting and sharing patient information electronically.

However, the current academic science career system and culture does not incentivize or reward scientists for making data available or for engaging in team science.

Eslie Dennis, executive director, Polycystic Kidney Disease Consortium, The Critical Path Institute provided examples of how nonprofits could drive data sharing and spotlighted lessons learned from the Alzheimer’s Disease Neuroimaging Initiative, the largest public-private partnership to date in Alzheimer's disease research. It is led by the National Institute on Aging at NIH, through a grant to the non-profit Northern California Institute for Research and Education, with private sector support provided through the Foundation for the National Institutes of Health..

Funding agencies like the National Institutes of Health and nonprofit disease research organizations carry the ability to fund non-traditional, collaborative projects in academia and drive data sharing and standards in large science initiatives. Similarly, the private sector has increasing incentives to encourage data sharing that would reduce the attrition rate of failed drugs in phase 2 and 3 clinical trials that could be accelerated with a more efficiently designed clinical trials infrastructure. By collaborating with regulatory agencies like the FDA, data sharing can drive better science for risk assessment and support contemporary regulatory science applications for emerging technologies for biomedical innovation.

Panel was moderated by John Dwyer, chairman, Telcare.

Watch a video of the session.