Harmon: Cancer Moonshot won’t work unless we fix how data is shared

Vice President Joe Biden has been given the daunting task of spearheading an effort to find the cure for cancer. Biden calls it a “moonshot.” Indeed, it is.

Yet, while our hearts may be in the right place, our heads are not. While seeing all the pink on professional athletes is nice, a color won’t save your mother. Those marathons and walks won’t save your child because the money you pony up to run or walk goes into a hungry black hole.

Here’s the truth, according to the National Institutes of Health: The U.S. government is expected to spend around $5.5 billion dollars on cancer research this year. That’s an impressive sum, but there’s no budget for a coordinated plan to make sure the left hand knows what the right hand is doing. Grants are awarded to researchers who don’t know what the other researchers are doing. Directly or indirectly, everyone is affected by cancer. So, how gut-wrenching, how inexcusable is it to know that the cure for cancer may very well be out there stuck in a researcher’s notebook somewhere, never to see the light of day, only because data is not formatted in a way that can be shared and compared.

Data are collected differently, even across centers within the National Institutes of Health. The same research is repeated year in and year out by different organizations that do not and cannot communicate or collaborate with each other. Why? Because any research these organizations perform is collected in a form that cannot be compared and shared, and is therefore siloed and frequently wasted. Therefore, accountability seems nonexistent. We simply cannot have a Moonshot for cancer without collaboration and open science. And, collaboration cannot happen when data does not speak the same language.

According the National Center for Charitable Statistics, there are 1.5 million nonprofit organizations in the United States alone. Logic dictates that certainly hundreds, if not thousands of these are focused on cancer, many of them concentrating on a specific type of cancer or the organ or tissue affected. Yet, 14 million people worldwide continue to be diagnosed with cancer each year, and 8 million are expected to die from it this year alone.

We are indeed at an inflection point. Finding a cure can be done. It should be done. What we need is smarter research to unlock cures. Breakthroughs like the successful mapping of the human genome and treatments for HIV occurred when scientists and researchers collaborated. They shared what was working and what wasn’t. Cancer and other diseases need the same collaboration. It starts by first formatting data in a common way to enable sharing. Data-sharing can significantly shorten the time between obtaining clinical research results and implementing those results as better clinical care decisions.

There is hope. Standards exist for data that researchers in more than 90 countries view as the gold standard for ensuring data synchronization. These are actually global standards, and in 2016, they will be required for clinical trial submissions by not only the FDA, but also the Japan Pharmaceutical and Medical Devices Agency. These standards have been developed in collaboration with the National Cancer Institute and are recognized by the International Organization for Standardization. They also are supported by the Innovative Medicines Initiative — funded by the European Commission — as well as patient and research advocacy groups such as the Critical Path Institute, One Mind, the Bill and Melinda Gates Foundation and many others.

On a panel discussing his Moonshot initiative, Biden said, “When you go home and talk to your friends about a cure for cancer […] I’ll bet you lunch that none of them say ‘data standardization.’” He also mentioned that we need to “speak plainly” about this issue, and “eliminate silos.” Without question, Biden is correct. And, those that know what it will take to land his Moonshot are working to do just that.

The cure for cancer won’t ever be found by doing research in silos. We need to shout from the rooftops that there are clinical research data standards that break down barriers, that by using these accepted, universal data standards, data can speak in a way we all understand, allowing us to learn from it and giving ourselves the chance to collaborate with that data — all in the effort to act, saving billions of dollars and, more importantly, millions of lives.

Harmon is chief operating officer of the Austin-based Clinical Data Interchange Standards Consortium.

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