Jonathan Kratchman, a 16-year-old with autism from Cherry Hill, likes participating in medical research studies.
"They explain everything to him," says his mother, Amy Kratchman. "For once he feels that someone is listening to him. He's always asking, 'Mom, when's the next study?' "
Over the next few years, both mother and son will be spending even more time on the front lines of autism research. Amy Kratchman is part of a research team at Children's Hospital of Philadelphia that recently received a $668,000 federal grant to help doctors understand the treatment outcomes that children and parents really want.
Clinical trials are critical because they test new treatments and help improve care. And while it may seem obvious to take the views of parents and children into account, that hasn't been the case.
Patients and health professionals often "speak a very different language," says Katherine Bevans, lead researcher on the project.
For example, she says, physicians treating autism spectrum disorder tend to "focus on things like aggressive behavior, lethargy, fatigue," which parents and children rarely mention.
"They ask, 'How does it affect the family? How does it help [the children] adapt better to new events and people?' " Bevans said. "Researchers often don't live in the real world."
The Children's grant was one of 50 nationwide made this year by the Patient-Centered Outcomes Research Institute, a Washington agency established under the 2010 Affordable Care Act. Its goal is to support comparative effectiveness research, which seeks to determine which interventions work best for particular conditions.
Despite its innocent-sounding name, comparative effectiveness has drawn fire from some critics who see it as leading to rationing of care. Some are Republican lawmakers. Others are physicians sold on procedures that researchers find have little value.
Its first grants, totaling $30 million over two years, stressed two of the agency's less controversial goals: improving communications and patient involvement.
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Autism research welcomes patients, parents' input