The EHC Think Tank
The Think Tank provides a platform for health systems change by engaging and working with a broad group of stakeholders in co-designing trajectories of positive future change in key thematic areas as set out in a public roadmap.
By targeting systems change, the EHC Think Tank seeks to mobilise the agency and purpose that all stakeholders in the healthcare system naturally have to co-identify the given problems from all of their collective perspectives. To co-design potential solutions and trajectories of positive future change that will then be co-championed, co-owned and co-implemented – thereby creating an ‘inside-out’ advocacy and multiplying its effect. As such, the Think Tank is a machine for systems change, not just a tank that thinks.
To learn more, go to ehcthinktank.eu.
How it works
The EHC Think Tank acts both as an incubator of patient-led advocacy content as well as a platform for the above-outlined ‘systems change’, and therefore, its work is divided into two parts:
Internal Think Tank work: patient-led advocacy content
Patient-led data collection and its ensuing advocacy materials form the cornerstone of the EHC’s work and continue to be driven and expanded from within the Think Tank. Additionally, the Think Tank supports patient-facing analytical work in key areas such as health policy and therapeutic advancements, while also supporting public-facing patient-experience testimonials and patient insights such as (but not limited to):
- Annual thematic data collection & publication,
- Annual thematic patient-cohort ‘story’ via film or another medium,
- Annual series of novel therapies newsletter, and
- Quarterly series of European health policy analysis.
External Think Tank work: a platform for co-creation and systems change
Each year the Think Tank runs working ‘sessions’ – so-called workstreams – dedicated to a specific European priority area. In 2021-2023, these areas are identified as:
- Patient registries,
- Hub-and-spoke models,
- Patient agency,
- Access equity, and
- Future care pathways.
Governance
Workstream members themselves drive the Think Tank’s workstreams. These members are identified and invited based on their subject matter expertise and potential for constructive engagement and ‘change agent’ contributions.
Workstreams are governed by Terms of Reference and Codes of Conduct and held under the ‘Chatham House’ rule. Workstreams are project-managed from within their individual membership – who set their own agendas, timelines and targeted outputs – with operational, logistical, methodological and facilitation support from EHC staff and Think Tank practitioners.
Concrete outcomes and results will vary across workstreams but are likely to include, although not be limited to, manuscripts, consensus-based guidelines, monographs, white papers, etc.
While the EHC Steering Committee oversees the Think Tank work as a whole, a designated Think Tank Council offers strategic advice, guidance, and input on its externally-facing work, particularly on the focus and composition of workstreams.
Importantly, the Council includes patient and industry perspectives from non-bleeding disorder disease areas and seeks HCP, academic and geographically balanced representation.
EHC Think Tank Council Members
Mike is Director of the Sheffield Haemophilia and Thrombosis Centre, Sheffield, UK. He trained in Medicine and Haematology at the Universities of Oxford, London and Sheffield in the UK. He is Professor of Haemostasis and Thrombosis at the University of Sheffield, and since 1994 he has been an honorary consultant haematologist at The Sheffield Teaching Hospitals NHS Trust in Sheffield.
Mike’s research interests include monitoring adverse events in haemophilia, hepatitis C in haemophilia, thrombin generation assays in bleeding and thrombotic disorders, and the genetics of inherited platelet disorders. Mike is the former co-editor of the journal Haemophilia and is on the Editorial Board of the journals British Journal of Haematology, Blood Transfusion and the Journal of Thrombosis and Haemostasis. In addition to chairing the EHC Medical Advisory Group (MAG), Mike is vice president of the European Association for Haemophilia and Allied Disorders (EAHAD).
Olivia Romero Lux is French and Spanish. After several years in the United States where her severe haemophilia daughter was born, she came back to France in 2000 and joined the French Haemophilia Society where she was active until the end of 2022, providing support to new families diagnosed with rare bleeding disorders, collaborating to the French 2012 and 2024 WFH Congress bids, being elected at the National Board, leading International Affairs and the Burkina Faso/France NMO Twinning programme, among others.
Focused on equal treatment access for all, youth education and NMO capacity building, Olivia was elected to the Steering Committee of the European Haemophilia Consortium (EHC) from 2013 until 2020 and has been EHC Youth Advisor since then. She was recently co-opted to join the EHC Steering Committee again. In July 2023, the EHC Steering Committee unanimously appointed Olivia Romero Lux to assume the role of President in an interim caretaking capacity until the end of the current term in October 2023 after the resignation of Declan Noone.
Anja Schiel has studied Biology at the Johannes Gutenberg-University, Mainz, Germany. She received her PhD from the Free University in Amsterdam in 2006 and worked several years as Post-Doc on a range of subjects focusing on oncology, immunology and molecular biology, first at the University of Leiden and later at the University of Oslo, before starting at the Norwegian Medicines Agency (NoMA) in 2013.
At NoMA she is working as special adviser/Statistician/Methodologist both on regulatory (EMA) and HTA projects. She has been Chair of the Biostatistics Working Party 2017 – 2019 and is currently the Chair of the Scientific Advice Working Party at EMA. In addition, she has been heavily involved in EUnetHTA activities, with focus on parallel EMA-HTA scientific advices as Norway is member in EUnetHTAs Early dialogue working party. This explains her particular interest in use of methodology and statistics in pharmaco-economic evaluations. She is furthermore involved in several IMI projects as member of their Scientific Advisory boards.
Martin Sedmina is a physician, a specialist in haematology and oncohaematology, working at the Department of Clinical Haematology at the F.D. Roosevelt University Hospital in Banská Bystrica, Slovakia. The department is also available 24/7 as an EHTC centre for haemophilia and other bleeding disorders.
Martin served as Vice-President of the Slovak Hemophilia Society from 2017-2022 and remains an active member of the organisation – he is currently responsible for international communication, incl. contact with the European Haemophilia Consortium and the World Federation of Hemophilia, as well as for the education and training of parents with newly diagnosed children with bleeding disorders in Slovakia.
Biography coming soon…
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
