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Every year, hundreds of billions in medical research and data are funded, in whole or in part, with public dollars. As a society, we do this because we believe that knowledge is for the public good, but the public gets very little access to the fruits of its investment. Our investment is a powerful and vital collective act — something we can do together that we could never do individually.
Last week, against the backdrop of the Flint, Michigan water crisis, President Obama talked about this essential element of a functioning society: a government that directs our shared assets towards solving great challenges.
“So it doesn’t matter how hard you work, how responsible you are, or how well you raise your kids — you can’t set up a whole water system for a city. That’s not something you do by yourself. You do it with other people. You can’t hire your own fire department, or your own police force, or your own army. There are things we have to do together — basic things that we all benefit from.”
As a community we are capable of working together to achieve greater things. If we marshal our resources to work together, I believe we can unlock the cure for cancer.
This is a rare opportunity. We need to change the models and shift our culture towards collaboration. We can’t just tweak around the edges — patients and their families can’t afford to wait. An alternative system, where all publicly-funded research and data are required to be shared would allow authors to unlock their content and data for re-use with a global audience, and co-operate towards new discoveries and analysis.
Today, we invest heavily in research, but to advance discovery and innovation, we need to break down the barriers that are preventing it. In the US, the combined value of our investment in government, non-profit, and university-funded research in 2013 was over $158 billion — about a third of all the R&D in the US that year. These institutions are either directly funded by public money, or subsidized by tax exemptions and public revenue.
Today’s academic publishing model, and standard practices hamper innovation and slow discovery. Research is hidden behind paywalls, and delayed from release by long embargoes. Data remain unavailable, or are restricted from being machine-readable to allow deeper analysis. The US government directly funds an average of $4.9 billion in cancer research annually, but nearly all of that work will sit behind paywalls and wait for long embargoes after it is published in journals. Meanwhile, academics are discouraged from releasing their data for fear of being “scooped” and therefore denied opportunities to publish and advance their careers.
In his State of the Union address, President Obama has called for a massive mobilization to accelerate discovery in cancer research, and Vice President Biden has stepped up to lead the change to find faster results. Our goal is a cure for cancer, and our responsibility is to the patients and families who suffer daily, need better treatments, and die far too often. We can definitely do better.
Earlier this month, I wrote an article in Wired outlining the challenges in the current system, and calling for those who support open access to research and data to rally around the Vice President’s Cancer Moonshot. I believe this is a rare opportunity to change the systems that fund and support discovery, and create a platform that supports rapid open innovation.
We’re not starting from scratch, and I’m not the first person to think of these ideas. There’s incredible leadership in open access that exists already, and a powerful broad-reaching movement of organizations, individuals, doctors, patients, scientists, government departments and agencies, funders, and non-profits that have already seen success through their initiatives. We can learn from what they’ve already achieved, rally around our cause, and take it to the next level.
Below I’ve shared four actions that we can take right now to improve the speed and probability of discovery for new treatments and cures, and mobilize a global movement towards finding a cure to this terrible disease.
- Make open the default for cancer research and data
- Take embargo periods on published work to zero
- Build a culture of collaboration
- Share cancer education and training materials as Open Educational Resources (OER)
Make open the default for cancer research and data
All government-funded and subsidized research about cancer should be fully open and reusable, which means it must be published under an open license like Creative Commons CC BY, which requires only attribution to re-use, translate, and otherwise copy and republish. But more importantly, content needs to be openly licensed so that it can be copied and retained for text and data mining (TDM) — highly-intensive computer analysis that allows for massive pattern recognition.
In his speech to the AACR, Vice President Biden noted the incredible power of super-computers to seek new discoveries. This won’t be possible until we unleash all the research and data in machine-readable formats, unhindered by paywalls and content management systems. Imagine trying to review 350,000 articles at once, especially if each one is behind a paywall, or in a system that restricts text and data mining, as many do.
We also need a solution for the raw, unfiltered data produced as part of these studies. Further discoveries are often hidden within these datasets, but if researchers don’t share the data, we’ll never find them. Or we’ll have to wait years as the primary researchers parse out the discoveries over time. This issue is more complicated, and touches issues of data privacy and also academic advancement and credit. But solutions exist that have been shown to accelerate innovation, like trusted collaborative spaces, data citation, and short embargo periods for raw study data.
Take embargo periods on published work to zero
The National Institute of Health’s open access policy requires all published papers to be deposited in a public archive within 12 months of publication. And while many researchers are sharing pre-prints (unreviewed articles) earlier, there is no compelling argument against sharing the final peer-reviewed research immediately. If we want to drive innovation, the first step is accelerating the pace at which everyone can read the research we fund.
The Gates Foundation showed incredible leadership with its own funding policy, which requires a CC BY license on all research it funds, with no embargo period whatsoever. Other foundations have adopted similar policies for the investments they make in all kinds of intellectual property, including the Ford Foundation, William and Flora Hewlett Foundation, and more.
Build a culture of collaboration
Perhaps the most challenging aspect of this shift will be changing the cultures around innovation and academia. Today, researchers are discouraged from sharing their data because other scientists — referred to by some as “data parasites” — might find new discoveries before they do. In a “publish or perish” culture of academic advancement, this puts researchers at odds with each other, instead of working collaboratively towards a common goal.
No easy solutions exist, but data citation — crediting researchers who produce the original data as new discoveries are made with it — and shifting the way we celebrate discovery to recognize that all innovation builds on what came before, will remind us all that our goal is better patient outcomes, not personal glory and advancement. Sage Bionetworks, a non-profit that builds tools for data collaboration among medical researchers, and a partner in the White House’s Precision Medicine Initiative, is finding new ways to build cultures of collaboration among scientists. We can learn from what’s working there, and seek opportunities to build a stronger collaborative community that celebrates everyone contributing to our goal.
Share cancer education and training materials as Open Educational Resources (OER)
The US government is already a leader in the support and adoption of Open Education Resources. Here’s one massive example: The Department of Labor’s $2 billion Trade Adjustment Assistance Community College and Career Training (TAACCCT) program supported 700 community colleges to produce materials that can easily and freely be re-used, updated, and repurposed.
The benefit of this as part of the Cancer Moonshot would be two-fold: improved access to the best, most up-to-date, most effective resources for teaching and training medical professionals, developed in a collaborative environment, and a reduction in the overall cost of materials across the board.
No one knows what the research and data will reveal until we set it free, but everything we know about collaboration and open systems shows that it drives faster discovery and greater innovation. I’m hopeful we’ll seize this opportunity and let a cure for cancer become one of our greatest collective achievements.
