Patient’s Corner

The European Liver Patients' Association (ELPA) is honoured to be a key partner of the LEOPARD project. As a leading voice for liver patients, ELPA is dedicated to advocating for the needs and interests of those affected by liver diseases, ensuring that patients' perspectives are integral to healthcare innovations. Through our involvement in LEOPARD, we bring the patient voice to the forefront of this groundbreaking initiative, ensuring that the needs, concerns, and experiences of liver cancer patients are central to research and development efforts. This collaboration empowers us to push for better diagnostic tools, more effective treatments, and comprehensive care strategies that truly address the challenges patients face. ELPA is committed to working alongside scientists, clinicians, and other stakeholders to advance liver cancer care, fulfilling our mission to support liver patients across Europe and contributing to a future where liver cancer is detected early, treated effectively, and managed with greater success.

Why is this project important?

Liver transplantation (LT) is vital for those with severe liver disease or liver cancer, but a shortage of organs makes it difficult to get transplants in time. Currently, a system created 20 years ago, called the Model for End-Stage Liver Disease (MELD) prioritizes patients for liver transplants. As more liver cancer patients join the transplant list, the existing system struggles, leading to high mortality rates, particularly in countries with lower organ donation rates.

To tackle this issue, the LEOPARD project brings together experts in liver transplantation and advanced data analysis to improve the organ allocation process. LEOPARD's goals include:

  1. Developing better algorithms to analyze which patients need transplants most urgently, improving the current MELD system.

  2. Creating tools specifically for patients with liver cancer (HCC) and severe cirrhosis (DC) to assist doctors regarding patient prioritization.

  3. Integrating new technologies like OMICs and radiomics to enhance the accuracy of risk assessments and refine the transplant allocation process.

LEOPARD aims to increase the number of timely transplants, improve patient outcomes, and standardize the allocation process across Europe, reducing disparities in access to life-saving liver transplants.

How will patients be involved in the LEOPARD project?

The European Liver Patients' Association (ELPA) will play a vital role in the LEOPARD project by representing patients' voices and addressing their unmet needs. Our tasks include leading communication and dissemination efforts to ensure that the project's goals and findings reach patient communities, civil society, and policymakers effectively. We will create informative booklets, host two laypeople events, and develop recommendations to address healthcare inequalities. Additionally, we will produce easy-to-understand videos featuring principal investigators, aimed at making the project accessible to a general audience. ELPA will also participate in key European and international congresses to further disseminate the project's impact. With our extensive online presence and network of 39 member organizations from 28 countries, we aim to amplify the project's reach and foster broad engagement and support.

This initiative is part of 20 EU-sponsored research projects endorsed by ELPA, all aligned with our mission to provide innovative and high-quality healthcare to liver patients across Europe.

Policy Impact of the LEOPARD Project

The LEOPARD project holds the potential to significantly influence health policies across Europe, particularly in the area of liver transplantation and cancer care. By introducing advanced data-driven methodologies and personalized risk assessment tools, the project aims to reshape how liver transplants are allocated, which can lead to more equitable and effective healthcare outcomes.

  1. Enhancing Policy Frameworks: The development of improved algorithms and prioritization tools under LEOPARD can prompt revisions to existing liver transplantation policies. Policymakers may consider integrating these innovations into national healthcare systems, standardizing practices across Europe to ensure that organ allocation is based on the most accurate and current medical data available.

2. Addressing Healthcare Inequalities: One of the key objectives of the LEOPARD project is to reduce disparities in access to liver transplants across different regions in Europe. By generating evidence that highlights the inequities in the current system, the project could drive policy changes aimed at harmonizing transplant criteria and organ distribution protocols, ensuring that all patients, regardless of their location, have equal opportunities for timely transplants.

3. Incorporating New Technologies in Healthcare Policies: The integration of OMICs, radiomics, and other advanced technologies within the LEOPARD project could set a precedent for the adoption of cutting-edge innovations in healthcare policy. As these technologies prove their value in enhancing the accuracy of patient assessments and outcomes, they may become standard components of healthcare policies, particularly in the field of organ transplantation.

4. Shaping Future EU Health Directives: Given the project's alignment with broader EU goals of improving healthcare quality and access, LEOPARD's outcomes could inform future health directives at the European level. The project's emphasis on collaboration, standardization, and innovation may influence future policies aimed at optimizing organ donation and transplantation processes across member states.

5.  Patient-Centric Policy Development: With the active involvement of ELPA in the LEOPARD project, there is a strong focus on ensuring that patient perspectives are integrated into policy discussions. This could lead to the development of more patient-centric health policies that better reflect the needs and experiences of those affected by liver diseases, particularly in areas related to transplant eligibility, post-transplant care, and long-term health management.

In conclusion, the LEOPARD project not only aims to advance scientific and medical practices but also has the potential to drive meaningful changes in health policy, ultimately leading to improved and more equitable healthcare systems across Europe.