EIT Health Hosts Morning Health Talks to Foster Patient-Centric Innovation for Rare Diseases

EIT Health, in collaboration with the Lithuanian University of Health Sciences, Kaunas University of Technology, and The Hospital of Lithuanian University of Health Sciences (LSMU) Kauno Klinikos, recently hosted the Morning Health Talks event. The event, themed 'Shaping a Patient-Centric Ecosystem for Rare Diseases through Open Innovation,' featured experts discussing open innovation strategies, patient engagement, regulatory challenges, and Lithuania's biotech innovation landscape. Since its initiation by the European Institute of Innovation and Technology (EIT) in 2019, Morning Health Talks has grown significantly, with the 2023 edition attracting around 1,000 participants across 26 locations.

Key Insights on Patient-Centric Innovation

Discussions at the event highlighted the importance of bottom-up innovation, mutual trust among stakeholders, strong foundational sciences, and a patient-centric mindset in healthcare. Lina Jankauskaite, Head of the Coordinating Center for Rare and Undiagnosed Diseases at The Hospital LSMU Kaunas Klinikos, stated, "Healthcare innovation, especially for rare diseases, must be patient-centric and data-driven. Our ecosystem needs to integrate e-health systems, advanced data analytics, and a robust education framework to truly support rare disease patients." Dr. Suja Somanadhan from University College Dublin emphasized, "Patients must be at the center of all healthcare initiatives. Their experiences and needs should drive innovation. By involving patients in the development process, we ensure that new treatments and technologies truly address their needs and improve their quality of life."

Government Support and Transparency in Health Innovation

Edgaras Narkevičius, Advisor to the Minister of Health at the Ministry of Health Lithuania, played a crucial role, representing the government's commitment to engaging with all stakeholders in the healthcare ecosystem. His presence underscored the importance of governmental backing in fostering a collaborative environment essential for biotech innovation in Lithuania. As Bogi Eliasen, Director of Health at the Copenhagen Institute for Future Studies, remarked, "Data is gold, but open data is platinum. To drive innovation, we need to rethink how we use health data, focusing on transparency, traceability, and accountability."

One key discussion, titled "Price of Health Innovation in Lithuania," focused on two main issues. Firstly, the need for improved transparency in the Ultra-Rare Disease Reimbursement Commission was stressed. Participants proposed creating an informative decision dashboard based on commission protocols for the Ministry of Health. Making these decisions public clearly and systematically could save healthcare providers significant time and improve coordination between rare disease coordination centers.

Secondly, the discussion addressed access to innovative treatments in Lithuania. Public misunderstandings, such as claims that "not all innovations are innovative," were examined through two case reports of innovative technologies dedicated to treating spinal muscular atrophy. The health technology assessment (HTA) journey of these technologies in Lithuania revealed several important pain points:

• Current local HTA legislation indicates unrealistic expectations for effectiveness evidence in the ultra-rare disease setting.

• There are scenarios where current HTA rules ignore possible national health insurance fund cost benefits provided by the innovation, focusing only on drug price comparisons.

• For rare disease assessments, consistency and public discussion with relevant experts in the field could help to better understand the decision-making process.

Collaborative Efforts to Enhance Biotech Business in Lithuania

The event also explored the broader context of conducting biotech business in Lithuania. Panelists discussed regulatory frameworks, support from local agencies, and the overall ease of establishing and growing biotech ventures in the country. While Lithuania adheres to clear European legislation, there is a consensus that more support is needed from bureaucrats at state agencies. Empowering, educating, and providing more resources to these bureaucrats could significantly benefit biotech companies.

The panellists highlighted the importance of collaboration and mutual understanding between companies and regulatory bodies to ensure a thriving biotech sector in Lithuania. Despite existing challenges in funding and bureaucracy, there was a positive outlook on the availability of good talent and the rewarding experience of building and producing in Lithuania. As one panellist noted, "Working in Lithuania offers a unique combination of access to top-tier scientific talent and the opportunity to contribute to a growing biotech hub. The collaborative environment here is truly inspiring."

About EIT Health

EIT Health is a network of best-in-class health innovators backed by the European Union. With over 150 partners, EIT Health works across borders to deliver new solutions that improve healthcare and enhance the lives of citizens. It leverages the expertise of its network to address the biggest health challenges facing Europe, focusing on promoting healthy living, supporting active aging, and improving healthcare systems. EIT Health accelerates innovation to improve healthcare, sustainably empowering Europe's health systems, and supporting a healthier future for all.