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Reach of Patients' Voices

Patients are increasingly influencing the course of medical research, but some are beginning to be concerned that their voices are being overtaken by commercial interests, NPR's Shots blog reports.

The influence of patients on the medical research process has become more formal than it used to be, NPR says. It notes that patient participation is written into the federal law that funds the US Food and Drug Administration, and the agency has held a number of meetings to hear from patients about their research priorities. In addition, NPR says that it appears that FDA is listening, as the agency temporarily approved a Duchenne muscular dystrophy treatment even though it hasn't been fully established to be effective.

However, Diana Zuckerman from the consumer group National Center for Health Research says that much of this participation is coming from patients who are working with drug companies. Drug companies, she says, have given millions of dollars and information to patient groups, and patients may then reflect those concerns.

At the same time, NPR notes that advocates like Sharon Terry, the CEO of the Genetic Alliance, are worried about that patient groups are becoming entrenched.

"I think advocacy still has a place, but I'm starting to be concerned myself — and again I run one of these groups — about how much that we're becoming 'the man,' and we really need to break down our silos," she says. "We start to be insular; we start to be competitive. And that's not going to serve the people who suffer." 

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