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.
How it works
The EHC Think Tank shall act 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’ – or workstreams – dedicated to a specific European priority area. In 2021-2022, these areas are identified as:
- Patient registries,
- Hub-and-spoke models,
- Patient agency,
- Access equity, and
- Future care pathways.
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
Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for raising awareness at a global level of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes hypermobility spectrum (HSD) and related disorders. Before joining the Ehlers-Danlos Society, Lara ran EDS UK from 2010-2015.
Lara regularly works with umbrella organisations lobbying at the government level internationally. In addition to her role as President and CEO of The Ehlers-Danlos Society, she is the Global Ambassador for Global Genes and Advocacy Committee Member for Rare Diseases International, Co-Investigator in the NIHR CONCORD: CO-ordiNated Care Of Rare Diseases, Expert Advisor in the European Reference Network Groups RECONNECT & VASCERN, Expert Advisor to PARADIGM & EPF, Working Group Member of the GenTAC Alliance Patients, Families, and Clinicians, and a Patient Group Consultative Forum Member for the Medicines and Healthcare Products Regulatory Agency.
In 2016 Lara completed expert-level training in medicines research and development and became a fellow of the European Patients’ Academy (EUPATI). Lara played a key role in the recent international effort to re-classify EDS and created management and care guidelines. She authored the subsequent classification publication in the American Journal of Medical Genetics (AJMG) in March 2017. She served on the steering committee of the International Consortium for EDS and Related Disorders.
Commemorating 10 years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), chronic illnesses, and rare diseases, Lara was officially appointed Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, the USA this year.
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).
Geoffrey McDonough, M.D. is CEO of Generation Bio and helps lead biotechnology companies’ work Surface Oncology and Zafgen. Geoff last worked in haemophilia when he served as President and CEO of Swedish Orphan Biovitrum AB (Sobi), a Swedish pharmaceutical company for six years (2011-2016).
Before joining Sobi, Geoff held several senior leadership positions at Genzyme Corporation (2002-2011), including Senior Vice President and General Manager, Personalized Genetic Health, Senior Vice President, Lysosomal Storage Disease (LSD) Therapeutics and President of Europe, Middle East and Africa (EMEA).
Declan is President of the European Haemophilia Consortium (EHC). Mr Noone has extensive experience as a patient advocate at the national, European and international level. He worked with the Irish Haemophilia Society (IHS) as Data and Public Policy Specialist for eight years. His main responsibilities included membership of the national tender board to purchase treatment products for haemophilia and other related conditions. He also worked in the area of Hepatitis C and access to treatments. Before being elected President, he worked with the EHC as a Project Consultant on the PARTNERS programme, an initiative to raise access to treatment in countries with a low standard of care. During his time with EHC, he also coordinated projects on data collection and novel therapies.
Declan has been a member of the WFH Board of Directors and a member of the Educational Materials-, Data and Demographics- and Safety and Supply Committee. In addition, he has authored and co-authored numerous papers on quality of life in people with bleeding disorders, access to treatment and care in Europe, and WFH and EHC monographs. He has degrees in Medical Engineering and Health Economics.
Brian is a member of the EHC Medical and Scientific Advisory Group and the Chief Executive of the Irish Haemophilia Society. In addition, he represents the Society on the statutory National Haemophilia Council, and he is the Vice-Chair of Ireland’s Haemophilia Product Selection and Monitoring Advisory Board.
Brian previously served as Chair of the Irish Haemophilia Society for 17 years (1987-2003), President of the World Federation of Hemophilia (WFH) for 10 years (1994-2004) and President of the EHC for eight years (2011 to 2019).
Brian continues to be a member of WFH committees, including its Safety and Supply Committee. Furthermore, he has authored and co-authored numerous papers on patient preferences, quality of life, access to treatment and care and procurement models, as well as WFH and EHC monographs. Brian is an Assistant Professor at the School of Medicine of Trinity College Dublin.
Debra is an Advanced Nurse Practitioner with more than 30 years of experience in Haemophilia and Bleeding Disorders care. Formerly the Lead Nurse at the Katharine Dormandy Haemophilia Centre, Royal Free Hospital, London, she now divides her time between her continuing clinical role and as Chair of Trustees and Director of Education at Haemnet, a charity which supports health and social care professionals promoting excellent care for people with bleeding disorders. Her main interests lay in exploring the lived experience and quality of life of those affected by bleeding disorders through qualitative research. She has a particular interest in supporting the needs of women with bleeding disorders and is a member of the EAHAD Women with Bleeding Disorders Group.
Debra is a member of the medical and scientific group for the UK Haemophilia Society, having served as one of its Trustees from 2005-2012. It is also on the Editorial Board of the Journal of Haemophilia Practice.
Thomas is former President of the Association française des hémophiles (2012-2018) and now Honorary President. He is a member of the EHC Steering Committee. He is chairman of the AFATH (African French Alliance for the Treatment of Haemophilia) programme, collaborating with the World Federation of Hemophilia dedicated to French-speaking countries in Africa. Thomas is currently a member of several WFH committees. He is also a board member of the French Blood Agency, the patient engagement committee of the French High Authority of health and the National School of Public Health.
Thomas is a former lawyer. Today, he designs projects of a partnership between patients and healthcare providers for hospitals or medical teams. He has worked for more than 13 years on educational programmes for and with patients with chronic diseases and rare bleeding disorders. In addition, he is leading the AFH working group on therapeutic education.
Cees Smit (1951) studied business economics at the Free University in Amsterdam. From 1978 till now, he has been a member of the research project ‘Haemophilia in The Netherlands’ at Leiden University Medical Centre (LUMC). For 11 years (1987-1998), he was coordinator of the Netherlands Haemophilia Society, and for an additional 4 years (1998-2002), he focused his work on mental health. He is also a founding member of the EHC.
In January 2003, Cees received an honorary doctorate from the College of Deans of the University of Amsterdam to recognise his work on patient participation, haemophilia and medical biotechnology.
Cees has authored several books, including on ageing with chronic diseases, like haemophilia and HIV. ‘Ageing with haemophilia’ was published in English in 2007. In September 2015, he published together with Annemarie de Knecht – van Eekelen the book ‘De macht van de patiënt, baas over je eigen ziekte’. So far, only available in Dutch, the English title would read ‘The power of the patient, master of your own disease’. One of the issues discussed in this book is the increasing cooperation between patients, researchers and industry in the drug development process (Patient 3.0). In 2020 he published his autobiography ‘Surviving haemophilia, a road trip through the world of healthcare.’
Yuri is the President of the Russian Haemophilia Society, a position he has held since 2000. He has helped establish more than 60 regional chapters around Russia to increase awareness and quality of care across the country. In 2005 he led a campaign that ensured haemophilia receives federal treatment support.
From 2000-2004 Yuri served as a Steering Committee member of the EHC. Currently, he is the co-chair of the Russian Union of Patients Public Societies and Deputy Chairman of the Public Council of the Ministry of Health of the Russian Federation. He is engaged in several other councils and working groups that focus on public health, patients’ rights and disability. Yuri holds a Law Degree from Moscow State Law University.
Already the recipient of numerous achievement awards in the fields of advocacy and volunteering – including for his activity in Eastern European countries – in 2020, Yuri received the WFH’s ‘President’s Award,’ its highest honour.
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.