innovation summit 2017...denis costello has worked with the european organisation for rare diseases...

EUROPEANPATIENTINNOVATION SUMMIT2017

REALISING THE CONNECTION OF DIGITAL TECHNOLOGIES

09:00 GMT+1, 10:00 CEST, 11:00 EEST17 OCTOBER 2017

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CONTENTS

Welcome 3

Summit Steering Committee 5

Ideathon overview 6

Agenda 8

Biographies 10

Notes 30

Abbreviations list 31

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WELCOME

Welcome to the 2nd European Patient Innovation Summit (EPIS 2017) – Realising the connection of digital technologies.

Building upon the success and key learnings of the inaugural 2016 Summit, Novartis has continued to collaborate closely with a number of Europe’s leading patient organisations in order to deliver this year’s event. Using the latest digital technologies, the Summit aims to bring together patient organisations representing chronic disease communities at both a national and European level. EPIS 2017 will feature an innovative multisite format, with regional hubs in France, Germany, Italy, Norway, Portugal and Spain, and a Central Hub in Dublin, Ireland. The Summit will also be livestreamed to a number of additional countries and patient organisation representatives from across Europe.

It is well-recognised that technological innovations are changing the way in which patients liaise with healthcare practitioners and manage their health. The 2017 Summit will:

• Review some important developments in digital technologies that are revolutionising healthcare and helping to give patients a stronger voice in healthcare decision-making

• Discuss ways in which the systematic resistance to accepting the value of the patient voice across the medicines lifecycle can be addressed

• Highlight solutions that have the greatest chance of bringing about the changes needed to give patients a stronger voice across the medicines lifecycle

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EPIS 2017 will comprise a mixture of forward-thinking presentations and a panel discussion livestreamed to all sites, in addition to breakout sessions located at the national hubs. It will be during these breakout sessions where you will have the opportunity to take part in the “ideathon”, working with your fellow attendees to identify solutions that facilitate meaningful patient input across the medicines lifecycle. The Summit will conclude with the most promising ideas from the ideathon being presented and a vote on the best proposal. We are confident that by working collectively in this manner we will help transform the current reality and secure a much stronger voice for patients across the medicines lifecycle.

We would like to thank the speakers, moderators, panellists, jury members and hub rapporteurs who have taken time out of their busy schedules to join us, either at the Central Hub in Dublin or at the various regional hubs across Europe. We would also like to thank all those who have worked so hard behind the scenes over the past months to ensure that the Summit runs as smoothly as possible.

We anticipate EPIS 2017 will be a highly engaging and informative event that provides a platform for you to network and discuss a key issue confronting the European patient community.

Summit Steering Committee



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SUMMIT STEERING COMMITTEE

Birgit Bauer (Germany) EMSP

Nicola Bedlington (Belgium) EPF

Denis Costello (Spain) EURORDIS

Giuseppe de Carlo (Belgium) EFA

Christina Fasser (Switzerland) Retina International

Stanimir Hasurdjiev (Bulgaria) Bulgarian National

Patients’ Organisation

Ottfrid Hillmann (Germany) EUROPSO

Neil Johnson (Ireland) CROÍ

Jan Koren (Slovenia) EUROPSO

Raj Mahapatra (UK) ASIF

David Palacios (Switzerland) Novartis

Susanna Palkonen (Belgium) EFA

Elena Ruiz de la Torre (Spain) EHA

Christoph Thalheim (Belgium) EMSP

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IDEATHON OVERVIEW

What is an ideathon?Inspired by the “hackathon” concept that is used in the technology world for intensive computer programming, an ideathon is a sprint-like event where groups of individuals with different skills and experiences use their combined knowledge to generate innovative ideas that solve challenging problems.

Why an ideathon?Our goal is to provide you with the time and space to think creatively and work collectively with fellow patient organisation representatives. We believe the ideathon will create an exciting, competitive environment to collaborate and find inventive solutions that break down the systematic resistance to accepting the value of the patient voice across the medicines lifecycle.

During the SummitFollowing the morning plenary session and a short introduction to the task at your regional hubs, you will form into small groups to work together to come up with creative solutions to the proposed challenge. Solutions must be SMART.

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SMART:Significant – the solution must have promise to bring about substantial and lasting change, and should be either European in nature or easily transferred to different countries

Motivational – the solution should make people want to be involved and attract attention

Actionable – the solution must have clear and tangible actions

Realistic – the solution should be achievable within the available resources and current knowledge

Time-bound – the solution should have a clear time goal for when it can be implemented

These ideas will be submitted to the independent jury who, using their extensive expertise and experience in different fields within the healthcare industry, will select three of the most promising ideas to be presented back to the larger group.

Ideathons often have a competitive element, and ours is no exception, with a vote taking place at the end of the Summit for you to decide which solution you think best solves the proposed challenge.

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AGENDA

Time Topic Speaker(s)/moderator(s)

09:00–09:15 GMT+110:00–10:15 CEST11:00–11:15 EEST

Welcome to EPIS 2017

Neil Johnson, CROÍ, Ireland; Elena Ruiz de la Torre, EHA, Spain; Laura McKeaveney, Novartis, Switzerland

09:15–09:40 GMT+110:15–10:40 CEST11:15–11:40 EEST

Science fiction in healthcare

Bertalan Meskó, The Medical Futurist, Hungary

Moderators: Neil Johnson, CROÍ, Ireland; Elena Ruiz de la Torre, EHA, Spain

09:40–10:05 GMT+110:40–11:05 CEST11:40–12:05 EEST

Digital reinvention: Rethinking healthcare

Heather Fraser, IBM Institute for Business Value, Global Life Sciences & Healthcare Lead, UK

Moderators: Neil Johnson, CROÍ, Ireland; Elena Ruiz de la Torre, EHA, Spain

10:05–10:30 GMT+111:05–11:30 CEST12:05–12:30 EEST

Setting the scene: Overcoming resistance to accepting the value of the patient voice – exploring differing perspectives

Panellists: Nicola Bedlington, EPF, Belgium; Karen Facey, Evidence-Based Health Policy Consultant, UK; Raj Sengupta, The Royal National Hospital for Rheumatic Diseases, Bath, UK; Marie-France Tschudin, Head of Pharma Region Europe, Novartis, Switzerland Moderator: Raj Mahapatra, ASIF, UK

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AGENDA (CONTINUED)

Time (GMT) Topic Speaker(s)/moderator(s)

10:45–15:00 GMT+111:45–16:00 CEST12:45–17:00 EEST

Ideathon

There will be no livestreaming during this time

All

15:00–15:30 GMT+116:00–16:30 CEST17:00–17:30 EEST

Presentation of most promising ideas

Hub Rapporteurs

Moderators: Susanna Palkonen, EFA, Belgium; Jan Koren, EUROPSO, Slovenia

15:30–15:45 GMT+116:30–16:45 CEST17:30–17:45 EEST

EPIS vote on SMART solution

All

Moderators: Christoph Thalheim, EMSP, Belgium; Christina Fasser, Retina International, Switzerland

15:45–16:00 GMT+116:45–17:00 CEST17:45–18:00 EEST

Meeting close and next steps

Christoph Thalheim, EMSP, Belgium; Christina Fasser, Retina International, Switzerland; David Palacios, Novartis, Switzerland

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BIOGRAPHIESEPIS STEERING COMMITTEE BIOGRAPHIES

BIRGIT BAUERGERMANY

Birgit Bauer is an e-Patient from Germany and was diagnosed with multiple sclerosis in 2005. She works for the Manufaktur für Antworten UG (www.manufaktur-fuer-antworten.de), which she founded in 2005 with her business partner. Birgit works as a social media and communications expert and journalist. She has more than 12 years’ experience in marketing, writing and working with patients and patient organisations. She has also been a member of advisory boards for the pharmaceutical

industry and a social media consultant for notable clients from different industries.

Birgit develops workshops and talks about the use of social media for target groups like patients, patient organisations and industry. As a consultant, she designs social media and organisation strategies for different businesses and patient projects, bringing ideas to reality, supervising different accounts, coaching teams and helping to design sustainable networks. She also designs and performs feasibility studies.

As a journalist, Birgit writes for offline newspapers, business magazines and for online magazines. Her themes are healthcare, patient experience, social media, networks and business. Birgit also blogs about multiple sclerosis and healthcare in Germany because, during her research into multiple sclerosis following her diagnosis, Birgit noticed there was a lack of information to help answer important questions about the disease or available therapies.

In 2007, Birgit started her blog Almost Normal – My Life with MS (http://leben-arbeitenmit-multiple-sklerose) and became one of the most influential multiple sclerosis and health bloggers in Germany. Birgit is involved in different advisory boards, committees and focus groups. She is also Advisor of Patient Issues at the European Multiple Sclerosis Platform (EMSP) and a European Patients’ Academy on Therapeutic Innovation (EUPATI) Fellow since 2015.

Birgit Bauer comments on her experience with social media: “Social media is about people, is about human stories, about sharing with others and understanding real-life experiences.”

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NICOLA BEDLINGTONBELGIUM

Nicola Bedlington studied business and human resource management in the UK and France. She was the founding Director of the European Disability Forum, an umbrella organisation uniting more than 70 European disability non-governmental organisations (NGOs) to advocate for the human rights and inclusion of disabled citizens in Europe (1996–1999). Prior to this she worked as an external expert for the European Commission, heading the NGO unit within the HELIOS Programme (1991–1996).

From 2004 to 2006, she worked for the Swiss Government, leading the Environment and Schools Initiatives Secretariat (ENSI), an international government-based network set up by the Organisation for Economic Co-operation and Development (OECD) focussing on innovation, action research and policy development in the field of Education for Sustainable Development.

While in Switzerland, she also worked as an independent consultant/evaluator, specialising in European social and development policy and health advocacy.

Nicola joined the European Patients’ Forum (EPF) as its first Executive Director in June 2006.

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Denis Costello has worked with the European Organisation for Rare Diseases (EURORDIS) since 2008 as the Online Communications Manager.

Denis has led the launch and operation of RareConnect (www.rareconnect.org), a multilingual social network for patients and families living with rare diseases. He is also part of the team that oversees the online awareness campaign around Rare Disease Day (last day of February annually;

www.rarediseaseday.org).

Denis is a regular speaker at international rare disease conferences, such as European Hematology Association, European Crohn´s and Colitis Organisation (ECCO) and Skeletal Care Academy. His responsibilities also include working internationally with rare disease patient organisations to build effective networks, raising awareness of rare diseases and supporting patient-led initiatives that engage with the broader public. He has a specific interest in the opportunities provided by online communication tools and social media.

DENIS COSTELLOSPAIN

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Giuseppe De Carlo is a Project and Financial Manager who has worked on the implementation and management of national and European projects since 2011. He has worked as a Project Officer/Manager in consulting companies as well as in non-profit organisations in different fields, such as education and training, culture and creativity, international co-operation and human rights.

He completed a Master’s degree in International Economics at the University “La Sapienza” in Rome, Italy, with research and study experiences in the United Kingdom and in Belgium. All of his previous work experiences were aimed at addressing people’s specific needs through the activation of dedicated initiatives.

His role at the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) allows him to work towards the development of actions and tools that will ease the life of patients with chronic diseases. He is responsible for the financial management of the organisation, and implementation and management of all activities related to EU-funded research projects, collaborating at the same time with the EFA Project and Fundraising Manager on the implementation of EFA’s own projects.

GIUSEPPE DE CARLOBELGIUM

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Christina Fasser worked for seven years as an Advertisement Manager in different international advertising agencies. Between 1978 and 1990 she worked at the Swiss Federal Institute of Technology, Zurich, on different projects related to the developing world, particularly in the field of food science.

In 1979, affected by retinitis pigmentosa, Christina became a founding member of the Swiss Retinitis Pigmentosa Society (presently named, Retina Suisse) and from 1986 onwards

became its President. In 1992 she was elected President of Retina International (formerly the International Retinitis Pigmentosa Association) and through this role she is involved in promoting research on both national and international levels, coordinating the efforts made by individual countries.

Christina Fasser is a scientific advisor for a number of ongoing European research projects. She also currently holds the position of Board Member for Age-related Macular Degeneration (AMD) Alliance, ProRaris, and Blinde Kuh, in addition to being Vice-Chair of Swiss Apple school. Christina has previously been awarded Honorary President of Retina Suisse and National Trustee of Foundation Fighting Blindness (USA).

CHRISTINA FASSERSWITZERLAND

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Dr Stanimir Hasurdjiev is one of the founders and current Chairperson of the Bulgarian National Patients’ Organization (NPO) — the biggest patients’ umbrella organisation in Bulgaria. By 2015, the membership of NPO accounted to around 80 disease-specific member organisations representing patients with different socially significant diseases in all 28 regions of Bulgaria. Dr Hasurdjiev has devoted his work to the patients’ advocacy sector and in

the defence of patients’ rights. In 2011, he represented Bulgarian patients in the Supervisory Board of the National Health Insurance Fund.

Stanimir is a board member of the European Patients’ Forum as well as a member of several regional and international organisations and networks, e.g. the World Hepatitis Alliance, European Community Advisory Board and International Capacity Building Alliance. He is one of the founders and current Secretary-General of the joint initiative of the European Patients’ Forum and the Bulgarian National Patients’ Organization — the Patient Access Partnership (PACT) — a multi-stakeholder platform for finding innovative solutions to reduce inequities in access to healthcare in Europe. He also serves as Secretary of the initiative, “Health Partnership”, which was officially launched in March 2015 as a permanent consultative body to the Council of Ministers.

Stanimir has received many Bulgarian and international awards, such as the Best Media Award for the World Hepatitis Day campaign in 2008.

STANIMIR HASURDJIEVBULGARIA

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Ottfrid Hillmann was diagnosed with psoriasis when he was sixteen years old and currently suffers from psoriasis vulgaris.

Ottfrid founded a regional group for patients with psoriasis and/or psoriatic arthritis in Düsseldorf in 1988. In 1995, he became a member of the German Psoriasis Organisation. In 2010, he became the second deputy leader of this organisation before becoming the leader in 2014. In addition, from 2007 he was President of European

Umbrella Organisation for Psoriasis Movements (EUROPSO) for six years. In 2014, he became a board member for this organisation.

OTTFRID HILLMANNGERMANY

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Neil Johnson is Chief Executive of CROÍ (the West of Ireland Cardiac Foundation) which is a registered Irish Heart & Stroke Foundation. Appointed in 1993 as its first CEO, he has led and managed the growth of the Foundation and its capacity to fund pioneering initiatives which have positively impacted at every level of cardiac care, from pre-hospital emergency care to post-hospital recovery and rehabilitation.

In recent years, under his leadership, CROÍ has expanded its work into the areas of stroke, diabetes and obesity. Among its milestones are the opening of the CROÍ Heart and Stroke Centre, Galway in 2012 — a first in Ireland facility — focused on the areas of prevention and rehabilitation, cardiovascular disease research, professional education and training and patient and family support. The centre has already established links with universities and institutions — nationally and internationally — and provides a range of evidence-based programmes and interventions delivered by a specialist multidisciplinary health team.

In 2014, Neil was instrumental in establishing the National Institute for Preventive Cardiology as an affiliate of the National University of Ireland, Galway. He has worked in the not-for-profit sector for over 25 years in the area of health and well-being, where he has a strong interest in patient advocacy and empowerment.

He holds a Master’s degree in Psychology from the National University of Ireland, Galway and in 2015 was elected as Chair of the first Irish Hospital Group Patient Council (Saolta University Healthcare Group). He is a founding member of both the Irish Heart Failure Patient Alliance and iHHub, the global Heart Failure Patient Organisation network. He is an Honorary Clinical Fellow of the School of Medicine at the National University of Ireland, Galway, where he leads an undergraduate special studies module on ‘the patient voice’.

NEIL JOHNSONIRELAND

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Jan Koren is an economist from Slovenia. Since 2016, he has been President of EUROPSO (the European Umbrella Organisation for Psoriasis Movements) and since 2011 has been President of the Psoriasis Association in Slovenia (Maribor office branch).

Jan owns a company that sells health equipment. In his spare time, he spends time on trips with his family and reads books.

JAN KORENSLOVENIA

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Raj Mahapatra was diagnosed with ankylosing spondylitis (AS) in 1994 but only discovered the National Ankylosing Spondylitis Society (NASS; the UK’s AS charity) in 2009 after having discovered a pain management regime that allowed him to revisit his passion for running.

A law graduate from Bristol University, Raj practised as a solicitor in England, where he advised insurance companies on their corporate affairs, before he moved to the United

States (US) as an integral part of his law firm’s e-commerce practice, advising fast-growing companies on their corporate and intellectual property strategies.

Since returning from the US in 2002, Raj has worked at Board level with pharmaceutical, drug development, public relations and film companies. Raj currently shares his time between working at board level with an international PR agency whilst developing various social impact projects both in the UK and around the world.

Raj was elected Chair of the NASS in 2014 and, shortly afterwards, was elected an Executive Committee Member of the Ankylosing Spondylitis International Federation (ASIF).

RAJ MAHAPATRAUK

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David Palacios – Head of Global Patient Advocacy is a physician, holds a Master’s in health administration and is a specialist in marketing management. He has developed different access and patient-related functions at Novartis Pharmaceuticals since 2004. David has been dealing with non-traditional stakeholders such as non-governmental organisations (NGOs), patient groups and officials from different governments and healthcare environments at

global, regional and local levels. During this time, David has developed a strategic approach for establishing an effective and transparent interaction between patient organisations and Novartis by finding common goals between them. Aligned with the Novartis patient-centric strategy, he has been working to develop a clear internal understanding of the patient experience and its relevance to support business objectives, as well as leveraging the incremental role of the patients, patient advocates and communities in the healthcare space.

David has contributed to the design, development and management of patient access programmes such as GIPAP (Glivec International Patient Assistance Program) and new patient access models such as Novartis Oncology Access (NOA) programmes based on a cost-share approach for enhancing access to innovative medicines in low and middle-income countries.

Prior to Novartis, David’s background includes 20 years’ experience as an executive of different healthcare companies in the private sector and as Director of the Subsidized Regimen at the Ministry of Health in the public sector. This experience enables him to understand the public policy and the decision-making process to prioritise healthcare investments. David also worked as a consultant for the World Bank and led chronic disease management programmes in Central America. Through this, he has a broader perspective when analysing healthcare issues and understanding the role of patients and patient organisations. He believes in fostering collaboration with patient leaders and other stakeholders to develop effective solutions to improve patients’ outcomes.

DAVID PALACIOSSWITZERLAND

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Susanna Palkonen is Director of the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA), which brings together 42 member associations from 25 countries to improve the care, environment, participation and equality of people with allergy, asthma and chronic obstructive pulmonary disease (COPD) at the European level.

Among others, Susanna is the patient representative in the European Commission Directorate-General (EC DG)

for Research and Innovation’s Horizon 2020 Scientific Panel for Health, eTRIKS Innovative Medicines Initiative (IMI) Project Ethics and Safety Board and the Advisory Board of the Human Brain Project. As Board Member of the European Patients’ Forum (EPF), an umbrella association for 64 European-level disease-specific patient groups and national platforms of patient associations, she also serves as a member of the European Medicines Agency (EMA) Patient and Consumer Working Party.

Susanna has studied social policy and, as a patient, she is interested in how both policies and systems, but also patients themselves, can support patient-centred care and prevention.

SUSANNA PALKONENBELGIUM

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Elena Ruiz de la Torre is President of the European Headache Alliance (EHA). She was Vice President from 2013 until February 2016, and has also previously served as Treasurer. She has been a member of the Board of the EHA since its inception. From 2005, Elena has also been President and Founder of the Spanish Patient’s Organisation, Asociación Española de Pacientes con Cefalea (AEPAC), a non-profit organisation that has been declared by the Ministry of Internal Affairs of Spain.

Elena has co-authored a number of publications, including articles in the Journal of Headache and Pain, and Functional Neurology, highlighting the current issues faced by patients and emphasising patients’ rights, with the aim of improving quality of life for patients with chronic diseases.

For Elena, the growing number of patients – particularly young patients – developing chronic headaches is a major concern, and in particular, the lack of information on the origin of this pathology. Her primary goal is therefore to aid researchers with tools and data that will contribute towards the prevention of chronicity in these patients.

ELENA RUIZ DE LA TORRESPAIN

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Christoph Thalheim spent the first part of his professional life in the German Airforce, where he got his university degree in pedagogics; he left as a Captain after 12 years of service.

A new orientation towards the field of intercultural learning followed, caused by a sabbatical year, which saw him travelling once around the world. Following this life-changing experience, he set up and ran the European Union (EU) liaison office of a major international non-governmental organisation (NGO)

in Brussels for 10 years, which focussed on intercultural learning and international youth exchange programmes.

In 2000, Christoph began a new professional challenge as an EU affairs consultant, working mainly as Secretary General of European Multiple Sclerosis Platform (EMSP), the European advocacy group that represents the interests of 40 national multiple sclerosis societies in 35 European countries, for more than 700,000 people affected by multiple sclerosis.

Since 2000, the EMSP has emerged from an unknown “kitchen table business” starting with 21 member organisations, one sponsor, no major projects, very limited funds and one “multipurpose” part-time member of staff, to one of the key players in European patient advocacy, with member organisations in 35 European countries, 16 sustainable industry partners, and several successful projects co-funded by the European Commission and/or other donors. It had sufficient funds to run a new Brussels-based secretariat, currently consisting of eight, mostly part-time staff. Since 2012, Christoph has worked for EMSP as the Director for External Affairs and as a part-time consultant, advising other NGOs on fundraising and networking.

EMSP has excellent working relations with the European Commission (DG SANCO, DG Enterprise, and DG Employment) as well as with members and senior staff of the European Parliament, and has a seat in several European Think-Tanks and Working Groups (including, the Patient-Industry Think Tank of the European Federation of Pharmaceutical Industries and Associations [EFPIA] and the European Medicines Agency’s [EMA] Working Party for European Patient and Consumer Organisations). It supports its 40 national member organisations by training, informing and lobbying initiatives and tools, in order to continuously improve the quality of life of people with multiple sclerosis, their care-givers and families.

CHRISTOPH THALHEIMBELGIUM

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FACULTY BIOGRAPHIES

Karen Facey trained as a statistician and has worked in two pharmaceutical companies and the UK Medicines and Healthcare Regulatory Agency (MHRA). In 2000, she set up the first national Health Technology Assessment (HTA) Agency in Scotland and since 2003 has been an independent consultant on HTA and patient involvement. She is a member of the Scottish HTA appraisal committee for non-medicines HTA and has research interests in

assessment of therapies for rare diseases and Managed Entry Agreements.

In 2005, she founded the HTA International Interest Group for Patient/Citizen Involvement in HTA and now coordinates their Working Group on Methods and Impact. She has been involved in the development of the HTA module for EUPATI and is Lead Editor on the Springer academic book, Patient Involvement in HTA, published in May 2017.

KAREN FACEYUK

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Heather Fraser is a pharmacist with over 30 years’ experience in the life sciences and healthcare sectors, holding positions in investigational medicinal products with Novartis as well as in consultancy with C&L/PwC Consulting/International Business Machines Corporation (IBM) and community pharmacy with The Boots Co. She is currently global lead for life sciences and healthcare in the IBM Institute for Business Value (the business think tank of IBM) where she researches

and develops thought leadership on industry business issues across the healthcare ecosystem, bringing together traditional and non-traditional parties, supported by emerging technologies (such as cognitive and blockchain) to provide the best outcome for the patient.

Heather holds a Master of Business Administration (MBA) degree from the University of Warwick in the UK in addition to her Bachelor of Pharmacy degree from the University of Wales. Heather is a registered pharmacist with the General Pharmaceutical Council and a member of the Royal Pharmaceutical Society.

Having travelled extensively for work and lived in Canada for three years, home is now the beautiful Yorkshire Dales, where she loves walking her dog, actively participating in community organisations and competing with the rabbits to maintain her vegetable plot!

Heather is active on Twitter: @HeatherEFraser.

HEATHER FRASERUK

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Laura McKeaveney is Head, Global Patient Advocacy, Novartis International. In this position, she has overall leadership of the Patient Advocacy strategy and agenda. Previously as the Head Global Human Resources (HR), Pharma, she was responsible for supporting the delivery of the Pharma strategy by driving a progressive people and organisational agenda, which focused on cultural transformation, diversity and inclusion, talent management and capability building for both the business and the HR function. As the Global

Head of HR for Pharma she was a member of the Executive HR leadership team for the Novartis Group. In her current role she is a member of the Executive Communication leadership team for Novartis Group.

She recently completed her three-year term as Chair of the International School of Basel (ISB), and in addition is involved in several projects in Basel and Africa focusing on young people. Professional recognitions include HBA Rising Star Award (2011); Novartis CEO award (2012); Medtronic CEO award (2005), European Diversity Leader nomination (2012 and 2015). Laura holds an MBA and is a fellow of the Chartered Institute of Personnel & Development (FCIPD).

LAURA MCKEAVENEYSWITZERLAND

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Dr Bertalan Meskó, PhD, is The Medical Futurist analysing how science fiction technologies can become reality in medicine and healthcare. As a geek physician with a PhD in genomics, he is also an Amazon Top 100 author.

With 500+ presentations, including courses at Harvard, Stanford and Yale Universities, Singularity University’s Futuremed course at the National Aeronautics and Space Administration (NASA) Ames Campus and organizations

including the 10 biggest pharmaceutical companies, he is one of the top global voices on healthcare technology.

Dr Meskó has been featured by several organisations, including the Cable News Network (CNN), the World Health Organization (WHO), and the British Broadcasting Corporation (BBC), in addition to dozens of top publications, including National Geographic, Forbes magazine, Time magazine, and the New York Times. He publishes his analyses regularly on www.medicalfuturist.com.

BERTALAN MESKÓHUNGARY

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Dr Raj Sengupta is a Consultant Rheumatologist and Lead for Ankylosing Spondylitis at The Royal National Hospital for Rheumatic Diseases (RNRHD) in Bath, UK.

He is a member of the British Society for Rheumatology (BSR) Spondyloarthritis Special Interest Group, the BSR Axial Spondyloarthritis (AxSpA) Biologics Guidelines Committee and a member of Assessment of Spondyloarthritis International Society (ASAS). Dr Sengupta has represented

the BSR at the National Institute for Health and Care Excellence (NICE) TA383 appraisal for anti-tumour necrosis factor (anti-TNF) in AxSpA. He is a trustee and medical advisor for the National Ankylosing Spondylitis Society (NASS) and is one of the founder members of the British Society for Spondyloarthritis (BRITSpA). He was also the recipient of the 2016 NASS Patients Choice award for the Best Care Provided by a Rheumatologist.

Dr Sengupta is the principal investigator in several national and international clinical trials in AxSpA. He has authored a number of peer-reviewed publications on AxSpA and has been an invited speaker on AxSpA at several national and international meetings.

RAJ SENGUPTAUK

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Marie-France Tschudin has been Head of Pharma Region Europe at Novartis since January 2017. She is a member of the Pharma Executive Committee.

Before joining Novartis, Marie-France Tschudin worked for Celgene where she was Corporate Vice President (VP) in Hematology/Oncology in the EMEA region (2014–2016), Regional Vice President (RVP) in Northern Europe (2012–2014), General Manager (GM) in AT, CH, CZ, PL, SI, SK

(2009–2011) and Country Manager in Switzerland / Deputy GM WER (2007–2009).

Prior to that, she worked for Schering-Plough Spain as Oncology Business Unit (BU) Director (2003–2006), for Schering-Plough Switzerland as BU Manager for Open Care (2001–2003) and Janssen-Cilag as Product Manager (1994–1999).

Marie-France Tschudin received an MBA from IMD Lausanne in 2000. In 1993, she received her Bachelor of Science in Foreign Service from Georgetown University, Washington DC, USA.

MARIE-FRANCE TSCHUDINSWITZERLAND

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NOTES

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ABBREVIATIONS LISTAEPAC Asociación Española de Pacientes con CefaleaAMD Age-related Macular DegenerationAS Ankylosing SpondylitisAxSpA Axial Spondyloarthritis ASAS Assessment of SpondyloArthritis International SocietyASIF Ankylosing Spondylitis International FederationBBC British Broadcasting CorporationBSR British Society for RheumatologyBRITSpa British Society for SpondyloarthritisCEO Chief Executive OfficerCNN Cable News NetworkCOPD Chronic Obstructive Pulmonary DiseaseCROÍ West of Ireland Cardiac Foundation DG SANCO European Commission Directorate-General for Health and ConsumersECCO European Crohn´s and Colitis OrganisationEC DG European Comission Directorate-GeneralEFA European Federation of Allergy and Airways Diseases Patients’ AssociationsEFPIA European Federation of Pharmaceutical Industries and AssociationsEHA European Hematology AssociationEHA European Headache AllianceEMA European Medicines AgencyEMSP European Multiple Sclerosis PlatformENSI Environment and Schools Initiatives EPF European Patients’ ForumEU European UnionEUPATI European Patients’ Academy on Therapeutic InnovationEURORDIS European Organisation for Rare DiseasesEUROPSO European Umbrella Organisation for Psoriasis MovementsGIPAP Glivec International Patient Assistance Program HTA Health Technology AssessmentIBM International Business Machines CorporationIMI Innovative Medicines InitiativeMBA Master of Business AdministrationMHRA Medicines and Healthcare Regulatory AgencyNASA National Aeronautics and Space Administration NASS National Ankylosing Spondylitis SocietyNICE National Institute for health and Care ExcellenceNGO Non-Governmental OrganisationNOA Novartis Oncology AccessNPO National Patients’ Organization (Bulgaria)OECD Organisation for Economic Co-operation and Development PACT Patient Access PartnershipRNHRD Royal National Hospital for Rheumatic DiseasesWHO World Health Organization

innovation summit 2017...denis costello has worked with the european organisation for rare diseases...

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