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/PCORI) - Sue Sheridan's life as a patient advocate has been shaped by two devastating encounters with the health care system. Her experiences brought her to the Patient-Centered Outcomes Research Institute
, where she works to ensure that patients' voices are heard throughout the research process.
PCORI was created to provide patients and those who care for them with high-quality information to make better-informed health care decisions. Better information about what works in health care will improve outcomes, reduce errors and help everyone live a healthier life.
"PCORI is an opportunity to focus on the health care questions that matter most to patients," Sheridan said. "Patients, their caregivers and clinicians don't have reliable information for many of the decisions they face. Whether it is a choice between medications, screening tests or surgery versus other therapies, we're too often left guessing about what the best option is."
Eighteen years ago, Sheridan's son Cal suffered significant brain damage from undiagnosed, untreated newborn jaundice. His condition could have been discovered and treated by a test that costs less than a dollar to perform. Four years later, a test found cancer in Sue's husband's spine, but it was filed away in his records without him or his doctors being notified. He succumbed to spinal cancer three years later.
Sheridan has seen the worst our health care system has to offer. And this widow and mother of two has dedicated her life to make it better.
"That's why I joined PCORI," Sheridan said. "To advocate for the patient's perspective in research, so we can get the answers that reflect our individual needs and preferences. Health care should be patient-centered, and the first step is transforming research."
The patient's role in research is central to PCORI's mission. Patients work with other health care community members to identify and prioritize research questions, review research proposals, participate on research teams and communicate research results.
"We are confident," Sheridan said, "that research guided by patients and other health care decision makers is more likely to produce results they can understand and effectively use to support decision making."
There are many opportunities for individuals to be involved in PCORI's work, and you do not need extensive knowledge about health care or research.
"PCORI wants suggestions for research questions from everyone," Sheridan added. "For our research reviewer program, we offer training so anyone can participate."
Information on how to participate in PCORI's work is available through the organization's website, www.pcori.org