The experiences of long covid patients are advancing a revolution in research not just for covid but also many other conditions. Patients, who have typically been only subjects in the research process, are becoming partners in it.
after a 2020 bout of covid, introduced a bill with the support of patient advocacy groups to expand treatment resources for people experiencing long-term effects.
Katherine R. Tuttle, a nephrologist at the University of Washington, has seen how patient perspectives can alter the way researchers do their work. She recalled a lab scientist who was so moved by speaking with patients that he vowed never again to throw away unused tissue. Only later did he discover that the frozen samples would prove key to advances in his work.
By 2012, the government was in on the game, establishing PCORI, or the Patient-Centered Outcomes Research Institute, an independent nonprofit, under the Affordable Care Act that calls for all stakeholders, including patients, to be involved throughout the research process.
From the researcher’s point of view, that very lack of accumulated medical science has created new possibilities.“There were no specialists,” said Harlan Krumholz, a cardiologist at Yale who has long believed in empowering patients in the research process. “The people who had the wisdom [about long covid] were the people experiencing it.” And that Krumholz, said “opened a lot of people’s eyes to a different way of doing research.
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