At the European Foundation for the Study of Chronic Liver Failure (EF CLIF), we belief that incorporating the patients' perspective in clinical research is critical to ensure that the research outcomes we measure reflect those which are most relevant to patients. Within the European Union-funded projects we coordinate, namely, MICROB-PREDICT, DECISION and A-TANGO, the European Liver Patients' Association (ELPA) is involved as a partner with representation in several stakeholder groups and committees of all three consortia.
Projects funded by the European Union's Horizon 2020 research and innovation program provide the framework for patient involvement throughout the research life cycle, from the design of the study to communication and dissemination of results. Having the opportunity to work with ELPA has allowed us to identify and address current unmet needs in liver disease and measure features deemed as important for patients.
In our efforts to engage with the local liver community, last week, we met with the President of the Catalan Association of Liver Patients (ASSCAT) and Coordinator of the Scientific Committee of ELPA, Dr. Teresa Casanovas, and volunteer expert patients Pilar Martínez and Pedro Santamaría. Over more than 20 years, ASSCAT, funder member of ELPA and associate member of the World Hepatitis Alliance, has expanded its pool of volunteer patient experts that contribute to the association's activities in different ways: providing support for patients and their families, creating practical resources, providing patient education, and advocating on behalf of patients, their caregivers and all those impacted by liver disease across Spain.
Dr. Casanovas told us that clinical studies generate information needed to help patients to understand better the disease and its progression. "A patient well informed adheres better to their follow up schedule and may result in better health outcomes", she explained. On many occasions, this information is not accessible to patients. Pilar and Pedro emphasized that perceiving stigma is very common among patients with chronic liver disease and oftentimes acts as a barrier to early diagnosis and intervention. ASSCAT plays an important role in translating research-based knowledge and providing educational programs that empower patients to take an active role in their health and wellness.
After our conversation, we came to the conclusion that incorporating the patients' perspective into clinical research is essential to ensure that patients' quality of life is sufficiently considered. Improving survival and increasing the quality of life of patients with chronic liver disease are our primary goals. In addressing this challenge, we find patients' associations one of our best allies.
We very much appreciate the time that Dr. Casanovas, Pilar and Pedro dedicated to us and look forward to fruitful collaboration.