(Washington, D.C., Wednesday, July 7, 2021)—Global Liver Institute (GLI) today announced the hiring of Robert Mitchell-Thain, a prominent international patient advocate, to the newly created position of patient insights director. Based in Edinburgh, Scotland, Mitchell-Thain builds on his and his mother’s experiences as liver disease patients to improve the experience for others.
“Creating patient-centered, person-centered healthcare and healthcare policy necessitates the active engagement of people with lived experience and the translation, identification, and curation of those experiences into quality measures, value assessment, and guides for future research,” said Donna R. Cryer, JD, president and CEO of GLI. “As an advocate who watched his mother struggle with liver disease, and as a patient himself, Robert is well-qualified to help GLI lead the field in developing and implementing models for patient-led innovation in digital health and healthcare design. His presence in the United Kingdom and widespread international network will help extend the reach of GLI’s advocacy and educational work. We’re delighted to welcome him.”
Mitchell-Thain was diagnosed with non-alcoholic fatty liver disease. His mother was diagnosed with primary biliary cholangitis (PBC), an autoimmune condition that affects the liver, in 1994, inspiring his entry into patient support and advocacy. He comes to GLI as the head of education and development for the PBC Foundation, the only United Kingdom organization exclusively dedicated to providing support and information to those living with PBC. He will continue to serve at Liver Patients International, a Brussels-based international liver patient-led umbrella advocacy association, as vice chair.
At the PBC Foundation, Mitchell-Thain played a key role in developing the foundation’s services, outreach, and impact on PBC. A powerful patient advocate, he is a key opinion leader internationally on PBC. As a passionate speaker, he has presented to audiences in Japan, Israel, Canada, the United States, Russia, and many countries around Europe on PBC and other liver diseases. He has led the foundation’s work to help improve patients’ quality of life including the launch of the PBC self-management app. PBC has no cure and can result in a liver transplant in severe cases. It occurs almost exclusively in women.
“I saw how the power of information, both diagnosis and finding the right support, made a huge difference for my mother,” Mitchell-Thain said. “Every single person affected by liver disease has the right to accurate, up-to-date information and support. As patient insights director, I look forward to progressing GLI’s mission to use the patient experience to improve the patient experience, incorporating patient-centric information and patient-driven advocacy to positively affect the quality of life for all liver patients and their families.”
Mitchell-Thain builds upon a number of collaborations with GLI, including his own guest spot on GLI LIVE, GLI’s weekly talk show.
Mitchell-Thain’s hiring comes soon after GLI formed its Pediatric and Rare Liver Diseases Council to elevate the visibility and voice of the pediatric and rare liver diseases community while advancing policies and research to help patients. The PBC Foundation is an active council member. GLI is also hosting an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on PBC in collaboration with the U.S. Food and Drug Administration (FDA) in 2022. A PFDD is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into FDA drug development and evaluation.
About Global Liver Institute
Global Liver Institute (GLI) was built to solve the problems that matter to liver patients, equipping advocates to improve the lives of individuals and families impacted by liver disease. GLI promotes innovation, encourages collaboration, and supports the scaling of optimal approaches to help eradicate liver diseases. GLI believes liver health must take its place on the global public health agenda commensurate with the prevalence and impact of liver illness. GLI is the only patient-created, patient-driven nonprofit organization tackling liver health and all liver disease holistically, operating globally. Follow GLI on Twitter, Facebook, Instagram, LinkedIn, and YouTube.