First International oral presentation for HCD NASH study
Leonardo Ruiz-Casas will present the methodology of GAIN (Global Assessment of the Impact of NASH) to the International Liver Congress. GAIN is a real world study drawing upon patient medical records and patient reported data, as an early contribution to the understanding of the socio-economic burden of NASH (Nonalcoholic Steatohepatitis) in Europe and the United States. Analysis of the data is currently being progressed. A number of peer review publications are scheduled to bring the patient level understanding of NASH to the scientific literature, to enrich future research and clinical understanding.
The International Liver CongressTM is the annual EASL meeting and the flagship event in EASL’s educational calendar. Every year in April, scientific and medical experts come together from around the world to learn about the latest in liver research.
HCD will be among a community of specialists sharing recent data, presenting studies, and findings, and discuss the hottest topics on liver disease. The annual Congress attracted over 10,000 delegates and 250 media representatives from all over the world. HCD is honoured to be selected to present our research as an oral presentation.
The International Liver CongressTM 2019 will take place 10-14 April 2019, Vienna, Austria.
Dr Jan Blatny EAHAD 2019 President – a personal perspective on the key issues for haemophilia in Europe?
‘We are still witnessing a significant disparity regarding care, world-wide, but also in Europe. Closing this gap is one of EAHAD’s main tasks, which we share with the World Federation of Haemophilia and the European Haemophilia Consortium.
I believe that the future belongs to comprehensive and personalized care where we do not treat only the disease, where we do not even treat only the body, but the human being as a whole. This holistic, multidisciplinary approach can make the most of the available treatment options and can be adapted based on the real life of a patient (their activities, dreams, challenges, and goals), based on the resources available.
For the past 40-50 years, the treatment arsenal we had was relatively stable. This has completely changed now and with the arrival of “new kids on the block” I believe that the time when we change our paradigm of haemophilia treatment is very close.’
HCD – a focus on the real life of the patient
HCD undertakes research that is designed to inform understanding of the real life of the patient. As part of the continuing series of global CHESS studies, data from the CHESS paediatrics study, was presented at EAHAD 2019, in Prague and became part of the debate among physicians and patient groups, seeking to understand the framework that will deliver the change in treatment paradigm, as envisaged by Dr Blatny.
Link to EAHAD website – for complete Blatny interview
For Haemophilia publications, please check our publications section
EAHAD 2019 - An introduction to ‘The cost of Haemophilia across Europe - A socioeconomic survey (CHESS)
Development of an EU Ethical Framework - a key initiative impacting socio-economic research
European Commission Expert Group has recently completed a consultation period, leading towards the formulation of an ethical framework for researchers interested in the potential of AI to inform patient level and socio-economic understanding by interrogating data that is drawn from AI as a data collection source.
On the 18th December 2018 the AI HLEG proposed the first draft AI ethics guidelines to the Commission, covering issues such as fairness, safety, transparency, the future of work, democracy and more broadly the impact on the application of the Charter of Fundamental Rights, including privacy and personal data protection, dignity, consumer protection and non-discrimination. Consultation was concluded on 18th January.
AI HLEG is the High-Level Expert Group on Artificial Intelligence (AI HLEG) that has the objective to support the implementation of the European strategy on Artificial Intelligence. This will include the elaboration of recommendations on future-related policy development and on ethical, legal and societal issues related to AI, including socio-economic challenges.
Jamie O'Hara, CEO of HCD Economics said "With the advancement of AI and the development of the new guidelines, there is real opportunity to further advance how we approach health economics in our efforts to secure efficiencies in modern healthcare systems.”
New DG SANTE report
The Commission's DG SANTE this week released its report on the impact of digital transformation of health services, drawn up by its Expert Panel on Effective Ways of Investing in Health. A comprehensive report with plenty of recommendations for national and local governments and it aligns well with the commitment to data strategy innovation that the HCD team undertake in partnership with Academia and Patient organisations in our focus areas. You can download a copy of the report from this link and can learn more about our Focus Areas from the link below.