National Patient Community-, Caregiver-, and Advocacy Group–Directed Strategies to Lead Comparative Effectiveness Research for Liver Cirrhosis
We have received funding from PCORI (Patient Centered Outcomes Research Institute) for a 9-month project (May 2015-Feburary 2016) to build a stakeholder infrastructure to perform research in end-stage liver disease. 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. Unfortunately, data does not exist on which treatments provide the longest life and best quality of life for an individual patient (e.g., cirrhotic liver cancer treatments, transplant timing).
Goal of Project:
The goal of this project is to build an advisory board of patient, patient advocate, clinician and researcher stakeholders, with a focus on end-stage liver disease (ESLD). This advisory board will serve as the infrastructure and long-term foundation for comparative effectiveness research (CER) related to the treatment of cirrhotic patients involving engaged stakeholders. To this end we are bringing together activated patients who suffer from cirrhosis or have received a liver transplant for cirrhosis, patient caregivers, and next of kin, as well as patient advocates and organizations from across the country (e.g., National American Liver Foundation (ALF) who are interested in being engaged long-term (~5-7 years).
During the current 9-month project we are initially working to identify individuals for the advisory board, which will tentatively include 15-20 patients/caregivers, 3-4 advocates, 4-6 clinicians, 2-3 researchers. The advisory board is meant to provide external unbiased control of the research process. This means advisory board members will be involved in 1) vetting research questions, 2) providing guidance as to how to reach the appropriate stakeholders depending on the specific research questions, 3) assuring continuously patient-centered and patient driven research related to end-stage liver disease. (Tier I: 2-3 hours until February 2016; Tier II, 1 hour every other month (6 hours/year). Time is reimburse. Once these individuals are identified, this group of stakeholders will work together to develop grant applications aimed at improving end-stage liver disease.
How Do I Get Involved?
As highlighted earlier, we are looking to recruit several stakeholders to join our project advisory board as well as our core study team. The time commitment is 2 hours/month for conference calls. From now until February, we do not have funding to reimburse individuals for their time on the conference calls, but starting in March 2016 we will be able to compensate individuals.
Project Coordinator: Nazanin Salehitezangi, firstname.lastname@example.org or 312-694-0246
Principle Investigator: Daniela Ladner, MD, MPH, FACS, 312-695-1703