High Prices Cost Lives: Matt Might's Plea for Open Research - SPARC

"The Mights’ story is one of many that highlight the impact of open science and open access.  It’s through access to the latest research that patients and their families can find the best care and support.

Once his son’s condition was given a name, Might set out to learn all he could to help Bertrand. “To find answers, we needed more patients and we didn’t have time,” he says.

Might wrote a blog about Bertrand’s condition that he hoped would go viral and rank high when someone searched on Google.  Within two weeks of posting, another patient was identified.  Over time, Matt helped build a community of patients, researchers and doctors to focus on how to treat and cure Bertrand’s rare disease. It enabled the group to form a foundation and raise money for research.  Members of the patient community then volunteered to participate in the research trials....

With Might’s help, Bertrand’s disease has gone from the unknown to a condition with multiple treatments....

At UAB, Might has helped develop a tool to digest abstracts from medical literature using artificial intelligence.  This can help patients connect the dots with what might be therapeutic for a given condition. The powerful reasoning tool (mediKanren) was successfully prototyped about a year ago with funding from the National Institutes of Health and is available free to the public....

As the Mights experimented with treatment options for Bertrand, they continued to do research and then share it with others. “I’m very much an open book, anything I find I publish,” Might says. “I’m very pro open science and beyond into open source. If there is code that backs up a paper, I also make that open source and publicly available.” ...

“Restricting access to the full medical literature is going to cost lives,” says Might...."