A Higher Calling of Semantic Technology: Linking Data to Save Lives

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After days full of technically-focused sessions at SemTechBiz, Hans Constandt’s keynote this morning, ONTOFORCE: Links for Lives, was a thought-provoking break from technicality. Instead of delving into the specifics of how ONTOFORCE–the Belgian startup where Hans currently serves as CEO–is using various semantic tools, leveraging taxonomies, or monetizing their products, Hans instead stepped back and reminded us all of the much bigger picture: Linked open data can save lives.

Hans started his talk by sharing three stories from his own life of family members who have faced rare illnesses and struggled to find the health information they needed. Hans was able to help his family members find access to vital health information after a great deal of time, effort, and investment. But after helping those closest to him, he didn’t want to stop there. Each condition he researched was rare, but that meant that other people in the world facing similarly rare conditions were undoubtedly entrenched in the same struggle to obtain quality information.

Hans quickly recognized that the most cost-efficient, fastest way to provide the citizens of the world–not to mention researchers and healthcare providers–with the medical information they need is to open up and link as much relevant medical information as possible. This is the goal of ONTOFORCE. Hans recently wrote, “Imagine what would happen if all the medical data in the world were combined. Researchers and doctors wouldn’t lose precious time. Patients’ lives would improve radically. ONTOFORCE started to turn this vision into reality developing and deploying semantic technology based solutions with strong focus on the user experience. Linked data combined with gamification and design for a purpose truly empowers the mind shift to better data driven patient outcomes.”

Of course, a key problem is getting pharmaceutical companies to share their data. Hans commented, “Holding data close gives you the IP, but if you share it, the data becomes much more valuable, because it takes less time and less money to get to the desired endpoint.” More and more clinical trials are becoming open, Hans noted, and this is an excellent step in the right direction. But if the health industry truly wants to help people live healthier, linked open data across the board will be essential to the process.

Hans also pointed out that pharmaceutical companies aren’t the only ones with valuable data to share: every day people also have knowledge to contribute. Hans himself is an example. After the ordeal he went through researching the illnesses his loved ones faced, he became somewhat of an expert on those specific topics and had a great deal of knowledge he wanted to pass along. Such information can be culled and curated from the general population through the use of semantic technologies and gamification.

Hans turned to the example of EyeWire, a game created by members of the Brain and Cognitive Sciences Department at MIT. The scientists behind this project are trying to map the human retina, something modern science has been unable to achieve (please disregard the female presenter’s poor fashion choice):

The number of people who have played EyeWire has now surpassed 50,000 people in over 100 countries, giving the researchers at MIT much larger data sets than they would ever be able to gather on their own and for dramatically less money.

Hans wants to apply the same concept to health data, and he is not the only one. Sharon Terry, CEO of Genetic Alliance is working to bring together information from 10,000 organizations focused on specific genetic disorders or genetic disorders in general. In a video for Genetic Alliance, Sharon pointed out, “The music industry responded to our needs and came up with iTunes and Rhapsody. We can get music on demand in a way we never could before, and I think we’re going to see the same thing in health and medicine.”

Hans urged that we need open and linked data in order to make this happen. “Working in pharma is hell,” he said. “There are too many different systems, too many URIs. It’s not easy. It’s not slick.” He believes, and the initial version of ONTOFORCE’s new health platform is showing, that semantic linked data solutions are the way to a simplistically designed health data platform that promotes a healthier world. “Data discovery and linking should be as easy as Google, as slick as Apple, and as fun as Angry Birds,” Hans insisted. In that way, we will be able to build links for lives.

Image: Courtesy Angela Guess

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