GLI Unites with Partnership to Improve Patient Care

Press Statement

PCORI Board Approval of Hepatitis C Funding

Today, the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors approved $50 million in targeted funding for four specific areas of research related to hepatitis C resulting from its expert advisory group meeting held on October 17, 2014.  Patients and patient advocates applauded PCORI for convening diverse stakeholders and for using a process that, with continued patient engagement, will prioritize the research questions that matter most to patients. 

PIPC Chairman Tony Coelho stated, “PCORI’s process of engaging a panel of experts on hepatitis C is more aligned with what Congress intended them to do as they prioritize specific research topics and create a research agenda that reflects the potential for new evidence to improve patient health, well-being, and the quality of care. For hepatitis C, investments in research and development and continued innovation have resulted in curative treatment options, and patients deserve to know more about how those options can best improve their individual health outcomes. I am pleased to see PCORI directly engaging hepatitis C patients and advocates in the prioritization of specific research questions, and would urge continued engagement of patients in the process of finalizing the funding announcement to ensure it truly reflects questions that matter most to patients. I look forward to PCORI learning from and improving upon this process of engagement for other specific high-priority areas of research.”

Ms. Donna Cryer, President and CEO of the Global Liver Institute, stated, “The liver community appreciates the recognition by PCORI that Hepatitis C represents both a public health challenge, with more than 3.2 million people in the U.S. and 350 million globally currently living with the virus, and a public health opportunity, with a new generation of curative therapies available. The urgency with which PCORI has stepped in to support the development of an ethical, collaborative process to build the body of high-quality information to guide researchers, patients, and their care teams to make the most of this opportunity further demonstrates the value PCORI provides to the healthcare system.”

Ms. Angela Ostrom, a member of PIPC's Steering Committee on behalf of the Epilepsy Foundation, stated, "As a patient organization, the Epilepsy Foundation has watched closely the process undertaken by PCORI to prioritize research topics in the area of hepatitis C and applauds PCORI's use of an expert advisory panel to determine the research questions that will best meet the needs of patients in health care decision-making. Unlike the investigator-initiated process embraced by PCORI to date, PCORI's process to identify priorities for research for hepatitis C was more closely aligned with the prioritization process we envisioned under PCORI's authorizing statute. We are hopeful PCORI will do more to identify specific priorities for research in its public comment process in 2015 with similar subsequent stakeholder engagement within those priority areas to identify the most useful questions for research."

Donna Cryer