The Data Deluge

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

Earlier this year FasterCures put together a Top Ten list of Medical Research Trends to keep an eye on in 2011. Coming in at number 5 on the countdown was Where is our GPS: Mapping the pre-competitive space. The trend outlined whether we could create a "marketplace" that will help facilitate the exchange of pre-competitive information and communal data sharing.

Recently, I saw first-hand a plan in action to work on this issue. I was among the participants at the second annual Sage Bionetworks Commons Congress. Sage Bionetworks is a new medical research organization with a focus on understanding biology as a network science and biological research as a community effort. Sage’s approach - shift to data intensive science built upon open access and broad collaborations to design network maps of disease built upon vast databases linking genotpyes, treatments, and medical outcomes.

Genomics is moving biology from an observational science to an informational science. Our way of thinking of disease is shifting from one gene, one disease to multiple genes with numerous phenotypes. In fact, diseases like cancer are now considered to be hundreds, if not thousands, of different diseases with a variety of underlying genotypes. This shift in understanding disease also means we need a shift in researching them as well. Finding cures for complex diseases in the 21st century will require us to fundamentally rethink how we conduct biological research.

Sage Congress participants noted that scientific disciplines such as physics and astronomy have benefited tremendously from data sharing and collaboration to build a fundamental new understanding or the universe. Similarly, the computer industry learned decades ago that open source access to software accelerated innovation, allowing tailoring of new applications to reach broader consumer markets. However, the field of biology has not yet undergone such a cultural shift. Despite technological revolutions in genomics and information technology, its approach to data sharing and knowledge generation still remains largely confined to closed networks and research silos with a focus on journal publications.

Sage is attempting to challenge this traditional paradigm by building a federated, open network commons for researchers to share large data sets, protocols, and research findings (positive or negative) to encourage collaboration and cross discipline interactions. This model supposes that the next biomedical revelations will be data driven and will require diverse talents and a community approach to research. Sage is currently underway building a data repository and the Congress featured a demo of Synapse, a portal that will ultimately include the repository, a cloud compute component, and tools for collaboration and workflows.

This is a decidedly different approach to biology, one that will require support from the research community as well as the patient organizations and the public. However, if this new world of data-driven medical science is to be a success, funding agencies and academia will also need to conform to the new reality. Incentives will need to shift to promote open access to data and collaborative science, both in terms of funding and career promotion.

It was noted at the conference that biomedical research is not so much limited by technology as it is by its culture. And cultural change can be extremely difficult. But if efforts like the Human Genome Project are any example, outcome-oriented research and collaborative scientific enterprises can transform our understanding of biology and with it, our ability to treat and to cure diseases. And at FasterCures, that is the bottom line.

Related Resource:FasterCures webinar on “Data Sharing Policies and Opportunities for Nonprofit Funders of Research?” View an archive online.