{"id":9188,"date":"2016-11-28T09:51:00","date_gmt":"2016-11-28T09:51:00","guid":{"rendered":"http:\/\/associatednews.us\/content\/2016\/11\/28\/patients-increasingly-influence-the-direction-of-medical-research\/"},"modified":"2016-11-28T09:51:00","modified_gmt":"2016-11-28T09:51:00","slug":"patients-increasingly-influence-the-direction-of-medical-research","status":"publish","type":"post","link":"https:\/\/associatednews.us\/content\/patients-increasingly-influence-the-direction-of-medical-research\/","title":{"rendered":"Patients Increasingly Influence The Direction Of Medical Research"},"content":{"rendered":"

By Richard Harris<\/a><\/span> <\/p>\n

\"Medical<\/a><\/div>\n
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Hanna Barczyk for NPR<\/span><\/div>\n<\/div>\n

Patients and their advocates are getting an ever-larger voice in how medical research is carried out. They participate in the design of experiments and have a greater say in what outcomes they care about most \u2014 and it’s not always simply living longer.<\/p>\n

Sharon Terry has lived through a couple of decades during which patients went from being complete outsiders to participants. She worries now that they risk being co-opted by the medical research juggernaut.<\/p>\n

Her story started in Boston in the mid-1990s, when she discovered that her two young children had been born with a rare genetic disease called pseudoxanthoma elasticum<\/a>. It’s a progressive disorder that causes connective tissue to gradually get hard, and can impair, skin, eyes and blood vessels.<\/p>\n

“Researchers came and took blood from us and our kids,” Terry says.<\/p>\n

A few days later, another set of researchers wanted to take blood, too.<\/p>\n

“We didn’t understand why they weren’t sharing. And we also didn’t understand why they weren’t working together,” she says.<\/p>\n

Terry, who is now 60 and lives in Washington, D.C., was a college chaplain before stopping to raise her family. She and her husband, a construction manager, came to realize that the researchers weren’t so interested in treating their kids. Their first priority was to probe the biology underlying the rare disease. Academics are rewarded for advancing the frontiers of biology.<\/p>\n

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