National Patient Community-, Caregiver-, and Advocacy Group–Directed Strategies to Lead Comparative Effectiveness Research for Liver Cirrhosis
Liver cirrhosis is a chronic disease that affects more than 5 million people each year, and is the 8th leading cause of death in the US. Patient-focused engagement of caregivers and other stakeholders is necessary to close the gaps between transplant disparities and lead comparative effectiveness research (CER) for liver cirrhosis. In the Tier II project, more focus will be put on the development of infrastructure and communication, which will then be leveraged to finalize the comparative effectiveness research question regarding the topic of end stage liver disease (ESLD).
Goal of Project:
To identify the most important questions patients and caregivers face with liver cirrhosis. To this end Tier II will mature relations formed previously, and develop additional ones across the US. We intend to apply the technology such as video conferencing tools and social media platforms successfully used in Tier 1 to continue to enhance stakeholder communication methods. Through this, we will finalize the governance structure and advisory board made up of patients, patient advocates, clinicians, and researcher stakeholders. This advisory board will provide high level feedback and ideas, as well as providing unbiased control of the research process when discussing and finalizing the CER question.
Key stakeholders currently consist of patients with liver cirrhosis and their caregivers representing the needs of other patients and caregivers across the US. In addition, patient advocacy groups, namely the ALF provide support and research for the prevention of liver disease, physicians serve as guiding roles in the development of CER questions, and allied healthcare professionals such as nurses and social workers provide focus on the most relevant, patient-centered research questions.
During the current 12-month Tier II project we are adding a group of stakeholders called connectors. Connectors not only have access to large stakeholder cohorts but also have a wide reach within their respective communities, and can assist in creating a truly patient centered CER question.
We are also working extensively on using technology such as video conferencing and social media platforms to bring stakeholders together and engage in the project. With the help of the national ALF this will lead to forming relationships with stakeholders in the Midwest, East and West Coast, with a focus to include representatives from underrepresented areas. In addition, we are working to provide a comprehensive portal for stakeholders containing educational material and other information to better understand comparative effectiveness research and liver cirrhosis.
How Do I Get Involved?
We are still looking to recruit stakeholders that can engage in patient outreach and comparative effectiveness research. Interested stakeholders are asked to participate in surveys and reaching out to their community of patients and engage in conversations about potential questions related to liver cirrhosis.
We invite you to take part in a brief survey (it will take about 2 minutes). Please let us know what topics are most important to you so that we can focus our research on these topics in the future. No names will be used to report the results of the survey. There will be no direct benefit to you by your participation in this research study, although the potential indirect individual benefits include possible improved understanding of issues faced by different stakeholders while dealing with liver disease. Your participation in this study will involve no cost to you. You will not be paid for your participation in this study. This survey is completely CONFIDENTIAL. All data will be evaluated in the aggregate. No clinician, will have access to individual level data. The data will be collected by researchers and compiled into the aggregate form before it is presented to anyone or used outside of the research context.
Project Coordinator: Nazanin Salehitezangi, firstname.lastname@example.org
Principal Investigator: Daniela Ladner, MD, MPH, FACS, email@example.com