WHEN PEOPLE WITH SCI HELP DESIGN IT
Jen French, vice president of the North American SCI Consortium and executive director of the Neurotech Network, says the $6.3 billion 21st Century Cures Act, enacted in 2016 and allocating $4.8 billion to the National Institutes of Health for precision medicine and biomedical research, helped shift the model from old-guard exclusionary research to present-day end-user input from the ground up.
Pharmaceutical
companies were among the first to embrace the concept of participation by
people for whom the products and treatments were designed because there is a
financial gain in avoiding expensive trials that fall apart from lack of
enrollees.
“When you design a trial, if it is not people-based, it has a higher probability of failure,” says French.
“Embedding
the voice of experience can totally change the way therapies, devices and
delivery of biologics is done. It’s about understanding the way we live our
lives.”
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