Liver cirrhosis affects over 4 million adults; it is associated with significant morbidity and is the eighth leading cause of death in the United States. Many cirrhotic patients die prematurely because they—and often their physicians—do not have the necessary information to guide their care, and therefore do not receive the best available treatment. National comparative effectiveness data are lacking about which treatments provide the longest life and best quality of life for an individual patient (e.g., cirrhotic liver cancer treatments, transplant timing). PCORnet, which includes electronic health records on approximately 100 million adults, offers formerly unavailable national information on cirrhotic patients. PCORnet data will provide answers desperately sought by patients and clinicians, and will provide highly reliable comparative effectiveness information tailored to individual patients.
Our goal for the Tier I project is to create the infrastructure for comparative effectiveness research for the treatment of cirrhotic patients. We will bring together cirrhotic patients, caregivers, and next of kin from across the country, along with the National American Liver Foundation, to discuss and prioritize the research questions of greatest importance to them, and to collaborate with clinicians and researchers. We also want to strengthen the communication of patients, caregivers, next of kin, and patient advocates with clinicians and researchers. Therefore, we will set up a national advisory board and governance structure to guide this collaboration and to create a strategic research plan that is patient and caregiver driven. Particular attention will focus on the information needs of elderly patients and Hispanic patients, the largest growing ethnic minority.