4 things to know about how the patient's voice is changing medical research

The role of patient's in determining the direction of medical research is expanding, according to an NPR report.

Here are four things to know.

1. Patients participate in the design of experiments and have a greater say in what outcomes they care about most, according to the report.

2. NPR reports there are now hundreds of patient groups. These groups focus on a number of conditions, from arthritis to xeroderma pigmentosum.

3. Since 2013, the Food and Drug Administration has held more than 20 meetings in which patients are invited to provide input on what actually matters to them, according to the report. For example, NPR notes, the FDA, after receiving input from parents and their scientific allies, temporarily approved a drug for Duchenne muscular dystrophy earlier this year. The approval was issued despite the fact current evidence didn't provide proof positive that the drug was effective.

4. But Diana Zuckerman, who runs a consumer group called the National Center for Health Research, cautioned that "so much of patient input is involving patients who are working with or who are recruited by drug companies," according to NPR. Therefore, she contends in the report, patient opinions at times unintentionally channel commercial interests.

 

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