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Patient-researchers and their scientist collaborators say the patient-led approach has big potential to move chronic disease research forward, making it more informed, quicker and more poised to directly improve patients’ lives.
Projects like Remission Biome “are going to change how research into these chronic, multi-organ-system diseases is going to be done,” Hoffman says. The approach may someday become a standard part of more mainstream research.
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ME/CFS patients have been particularly motivated to pursue their own research, says Emily Taylor, vice president of advocacy and engagement at the ME/CFS organization
Solve M.E. One key motivator is “the failure of the medical establishment to provide any sort of support or treatment or quality of life improvements for this population,” she says. Previous ME/CFS research done without patient input, such as a now-debunked clinical trial examining exercise as a potential treatment, has led patients to push back with their own studies.
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Patient-led research “moves orders of magnitude faster than traditional modes of research,” Putrino says, because it focuses on the questions that are of greatest concern to patients, leading more quickly to impactful results. Patient-led groups may also be able to start new studies more quickly than institutions that have to, say, go through formal academic procedures, he says. In that way, this research is similar to how start-ups move faster than large corporations.
In addition, patients can help scientists design studies that are more likely to provide accurate results.
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Advocates like Seltzer argue that patient-researchers are more incentivized than anyone to make sure their results are accurate. “If we’re wrong, we and people like us suffer,” she says.
https://www.sciencenews.org/article/patient-led-research-health-medicine
