Meet the Speakers

Virtual Q&A Webinars with Severin Schwan

Severin Schwan, Switzerland

Dr Severin Schwan has been the Chief Executive Officer of Roche since 2008. He brings relentless drive for innovation and passion for personalised healthcare to his role at Roche.

He joined Roche as a trainee in 1993 and has stayed with the company ever since. He is fascinated with Roche because "we can create significant value for society by saving lives and improving the quality of life of millions of people and their families."

He received his graduate degree from the University of Innsbruck and a doctorate degree from the University of Innsbruck.

 

Bastian Hauck, Germany

Bastian Hauck is a diabetes advocate, keynote speaker and strategic business consultant with over 10 years of experience in building authentic, self-sustaining patient communities.

He serves on the board of diabetesDE – Deutsche Diabetes-Hilfe, is a Director of the International Diabetes Federation, a Patient Expert with the Innovative Medicines Initiative and Co-Lead of OPEN Diabetes, a patient-led consortium doing research on do-it-yourself artificial pancreas systems and the #WeAreNotWaiting movement.

Bastian is the Founder of #dedoc°, an international network of diabetes advocates, and creator of #docday° and #dedoc° voices, which empowers patient advocates to attend scientific conferences, collaborate with researchers and industry experts and report back to their communities. With Dedoc Labs, he leverages the expertise within the #dedoc° community to help fellow diabetes advocates, patient entrepreneurs, start-ups and Fortune 500 healthcare companies achieve their goals in line with the spirit of the #DOC: Pay it forward.

Webisodes

Power of Data

 

Harnessing the power of data to make better clinical decisions

Bastian Hauck, Germany

Bastian Hauck is a diabetes advocate, keynote speaker and strategic business consultant with over 10 years of experience in building authentic, self-sustaining patient communities.

He serves on the board of diabetesDE – Deutsche Diabetes-Hilfe, is a Director of the International Diabetes Federation, a Patient Expert with the Innovative Medicines Initiative and Co-Lead of OPEN Diabetes, a patient-led consortium doing research on do-it-yourself artificial pancreas systems and the #WeAreNotWaiting movement.

Bastian is the Founder of #dedoc°, an international network of diabetes advocates, and creator of #docday° and #dedoc° voices, which empowers patient advocates to attend scientific conferences, collaborate with researchers and industry experts and report back to their communities. With Dedoc Labs, he leverages the expertise within the #dedoc° community to help fellow diabetes advocates, patient entrepreneurs, start-ups and Fortune 500 healthcare companies achieve their goals in line with the spirit of the #DOC: Pay it forward.

Lorna Warwick, Canada

Lorna Warwick was appointed CEO of the Lymphoma Coalition in December 2018, to provide vision and leadership for the 83-member strong organisation, having previous been the Coalition’s Director of Strategic Communications and Engagement. 

Lorna has successfully held senior leadership roles in health charities for more than twenty years and has a diverse background in patient advocacy, mission development, communications, and strategic planning.

Her efforts have been focused on haematological cancers since 2003, at a national (Canada) and global level. Lorna is recognized and respected for strong leadership skills, breadth of knowledge, critical thinking, and patient-focus. As a result of her years of experience in advocacy and especially in the haematology field, she is frequently asked to present on emerging trends and important issues in the lymphoma and CLL landscape.

Effectively generating and managing health data

Pieter van Galen, Belgium

Pieter van Galen is a freelance trainer and consultant with over 20 years of experience as a speaker and experience as a MS advocate and experience expert.

He was diagnosed with multiple sclerosis (MS) in 2006 and is a member of the European Multiple Sclerosis Platform (EMSP) and various steering groups. Through his advocacy work, he hopes to help raise awareness of MS and improve patients’ experiences and empower others.

Pieter is also active in the MS Data Alliance initiative, raising awareness of the value of real-world health data to different stakeholders.

Nicole Boice, United States

Nicole founded Global Genes in September 2008 catalyzed by a friend whose son was born with a rare genetic condition called Joubert Syndrome. Their journey to a diagnosis, and introduction to the magnitude of patients impacted by rare disease, is what inspired Nicole to create Global Genes to support patients and families impacted by one of the 9500 known rare diseases.  

 

Nicole successfully launched and built Global Genes into a multi-million dollar non-profit organization, fulfilling the vision and mission of creating a connected, empowered and equipped global rare disease community.  Since its inception, Global Genes has impacted hundreds of thousands of patients worldwide, has engaged with over 700 rare disease patient advocacy organizations in over 25 countries, and has partnered with over 100+ biopharma partners and academic research institutions.  Global Genes has become an important hub and connecting point for the global rare disease ecosystem.

In addition to her role at Global Genes, Nicole has co-founded RARE-X, a new non-profit, that is set to become the largest collaborative patient-researcher data engagement and federated data platform the world over.  The mission and vision of RARE-X is to help accelerate disease understanding, diagnosis, and the development of future cures, while removing the barriers to access to support, technology and tools to accomplish these goals.  RARE-X believes that in the future, patient owned data will be powering progress, and the organization will work to ensure that patients are properly supported to do just that.

Nicole has worked with world-class organizations in media, pharmaceuticals, venture and the high-tech sector. Nicole is a proven leader, passionate creator, collaborator and entrepreneur.

Nicole serves as a member of ICORD, a founding board member of the ARM Foundation for Cell and Gene Medicine, Angel Aid, the KIF1A Patient Organization and Global Genes, and serves in an advisory capacity for several biotech and patient advocacy organizations.

Nicole holds her BS in Political Science from the University of California San Diego. She is a proud wife and mother of two college age children.

Building trust and confidence in health data

Nicola Bedlington, United Kingdom

Nicola Bedlington is a founding partner of Millwater Partners, a consultancy focusing on sustainability, and is the lead for health, social policy, and multi-stakeholder engagement.

Nicola currently advises global health bodies (International Society for Outcomes Research – European Chair for their 2020 Conference, Drug Information Association (DIA), World Economic Forum Health Futures Council, International Consortium for Health Outcomes Measurement, (ICHOM) and is special advisor to the European Patients’ Forum (EPF).

From 2006 to spring 2019, she served as Secretary General of EPF, growing the organisation from 23 to 74 member organisations and creating a vibrant secretariat in Brussels. She was instrumental in establishing EPF as the key interlocutor for the EU Institutions, WHO and OECD on cross-cutting policy issues affecting all patients. During her time at EPF she co-founded numerous multi-stakeholder initiatives and campaigns to advance equitable access to healthcare, patient empowerment and responsible health data sharing. She led major capacity building programmes for patient advocates, in particular in CEE countries, and co-led two Innovative Medicines Initiative projects on patient education and patient engagement in therapeutic innovation processes.

Prior to her role within EPF, Nicola ran her own consultancy for several years, during which she undertook international assignments in the fields of health, disability and ageing, including external evaluations. She also received a 2-year mandate from the Swiss Government to lead the Environment and Schools Initiative, an international governmental network set up by the OECD to advance sustainability education.

Earlier in her career, Nicola also served as the founding director of the European Disability Forum, and as an external expert for the European Commission leading an EU funding programme and advisory body on disability.

Nicola studied business and human resource management in the UK and France. She has lived in the UK, France, Belgium, and Switzerland, and for the last 8 years in Vienna, Austria.

Alastair Kent, United Kingdom

For almost 25 years, Alastair Kent was the Executive Director of Genetic Alliance UK – a UK alliance of over 200 patient support groups for patients and families with rare and genetic disorders.

In that capacity he was actively engaged in developing policy and practice in biomedical research and service development that would reflect and respect the needs and expectations of patients and families affected by serious, chronic and life-limiting diseases; these diseases could be rare, genetic or arising from a combination of both those factors.

Alastair worked at a national, European and international level to ensure the voice of patients and families was heard, and acted on, in situations where decisions were taken and plans were made. He has been a member of many committees and working groups and has lectured and published on a wide range of issues relevant to patient and family needs and expectations.

Alastair was made OBE for services to healthcare in 2011 and elected as a Fellow of the Royal Society of Arts in 2017.

Since retiring from Genetic Alliance UK, he has continued to work on behalf of patients and families.

Digitalisation of Healthcare

Tapping into the true value of electronic health records

Rachel Nissanholtz-Gannot, Israel

Rachel Nissanholtz-Gannot is a professor and Head of the Health System Management department at Ariel University. She also serves as a research scholar at the Smokler Center of the Myers-JDC-Brookdale Institute in Jerusalem, Israel.

Rachel is a lawyer, and her research focus is on health policy issues as well as medical ethics and patient-centred care. 

Rachel has volunteered as a patient advocate for the Israeli Gastro-Intestinal Stromal Tumor (GIST) Association since 2010.

Stefan Gijssels, Belgium

Stefan Gijssels, a metastatic colon cancer survivor, is Chief Executive Officer and a board member of Digestive Cancers Europe, the umbrella organisation for all digestive cancer patient associations in Europe (oesophageal, gastric, pancreatic, colon, rectum and rare digestive cancers); the organisation represents 30 national associations. 

He is the Co-Chair of the Patient Advisory Committee of the European CanCer Organisation (ECCO) and Co-Chair of the Scientific Committee of Sharing Progress in Cancer Care (SPCC). As an expert, he also participates in the European Commission’s Innovative Partnership for Action Against Cancer (iPAAC) and the European Reference Networks for Rare Adult Solid Cancers (ERN EURACAN).

Since 2016, he has also worked as an independent health policy advisor, publicist, facilitator and moderator, working for public health authorities, patient organisations and industry. 

Until 2016, he was the Vice President of Communication and Public Affairs at Janssen Europe, Middle East and Africa. He was the Vice Chair of the Belgian Federal Science Policy Council, a board member of the Flemish Institute for Science and Technology Assessment (an advisory committee for the Flemish Parliament), Chair of the Communications Committee of the Federation of Belgian Enterprises, and Chair of the Trust and Reputation Policy Committee of the European Federation of Pharmaceutical Industries and Associations (EFPIA). 

Stefan has a master’s degree in Linguistics and Literature from Leuven University, Leuven, Belgium.

Health monitoring in the era of connectedness

Elin Haf Davies, United Kingdom

Elin Haf Davies began her career as a Paediatric Nurse at Great Ormond Street Hospital, moving into research and spending six years managing clinical and academic drug trials, in metabolic, neurology, endocrinology and pain.

Her PhD focused on the development of age-appropriate and disease specific biomarkers and clinical endpoints in neurometabolics (lysosomal storage disorders).

In 2007 Elin moved to work at the European Medicine Agency Paediatric Team where, amongst other projects she evaluated over a 100 Paediatric Investigation Plans, working closely with Scientific Advice and the Orphan team.

Elin founded Aparito in 2015, a digital health company focused on developing patient centric digital outcomes to support decentralised trials. She also serves as the Chair of Board of Trustees for Metabolic Support UK, a patient advocacy group supporting 400 rare inherited metabolic diseases.

In her free time Elin has a passion for extreme adventure to raise money for charities close to her heart. In 2007-2008 she rowed across the Atlantic Ocean, raising £190,000 for metabolic research at Great Ormond Street Hospital. 

Kawaldip Sehmi, United Kingdom

Kawaldip Sehmi is the Chief Executive Officer of the International Alliance of Patients’ Organizations.

He has an academic background in public health and law, and was the Managing Director of an international children’s legal centre, leading a team of international lawyers who worked for children’s rights, including their right to health. He has also served as the Chief Executive Officer of an international mental health charity specialising in niche mental health services supporting young people and adults with complex mental health, personality disorder and substance misuse problems. Additionally, Kawaldip has experience of supporting vulnerable clients, assisting them to gain access to legal services, age/gender sensitive information, advice, and outpatient and residential care within therapeutic community settings. 

Kawaldip is a passionate advocate of WHO’s human-rights-based approaches to health and the strengthening of the institutional, legislative, policy, practice and standards framework needed to support the achievement of all 17 goals of the 2030 Agenda for Sustainable Developmental Goals (SDG), especially SDG 3.8, universal health coverage. He supports access to innovative health technologies like genomics, in particular gene and cell therapies, utilising his commercial experience of running an international design and build partnership in patient advocacy, which is backed by an MBA degree.

Augmented intelligence and machine learning

Peter Bannister, United Kingdom

Peter Bannister is Chair of the IET Healthcare Sector. His remit is to inform the public, and policymakers, on the part engineering can play in addressing society’s healthcare challenges, while ensuring that engineers have the training and networks with other stakeholders across the healthcare delivery landscape that are needed to develop effective, timely and clinically validated innovations. 

Concurrently, he is also Chief Customer Success Officer at Mirada Medical, charged with the delivery, retention and growth of the global user base for the company’s clinical software solutions for radiation oncology, diagnostic imaging and interventional medicine based on technologies such as deep learning.

He has helped build multiple high-growth biomedical businesses, from start-up to global organisations. His contributions include strategy development, fundraising, research and product development, operations and regulatory management, leading to the commercialisation of cutting-edge products for surgery, diagnostic imaging and phenotyping in many international markets. 

Peter holds a DPhil in Medical Imaging from the University of Oxford, Oxford, UK, where he also carried out post-doctoral research in machine learning with Rolls-Royce and is an inventor on multiple patents. He is an IET Fellow; Academy of Medical Sciences Future Leader in Innovation, Enterprise and Research (FLIER) and co-opted member of their Council; TEDx speaker; chartered engineer; business mentor/advisor; and a committed supporter of Science, Technology, Engineering and Mathematics (STEM) initiatives.

Andrea Ferris, United States

Andrea Ferris is President and Chief Executive Officer of the LUNGevity Foundation. She became involved with lung cancer advocacy following her mother’s death from the disease in 2008. 

Determined to drive more money into lung cancer research, Andrea left the successful software company that she helped launch to found Protect Your Lungs, an organisation that focused solely on funding early detection research. In 2010, Andrea merged Protect Your Lungs with Chicago-based LUNGevity, to form the nation’s leading lung cancer focused non-profit organisation.

Andrea’s strong business background, combined with her connections in the worlds of research and advocacy, has enabled her to build one of the pre-eminent patient advocacy organisations in the lung cancer field. LUNGevity funds translational research into both early detection and more effective treatments of lung cancer, as well as a highly coveted Career Development Awards programme. LUNGevity also fills unmet needs for people diagnosed with lung cancer by providing education, support and survivorship programmes. Recognising the need to build awareness and understanding about lung cancer, LUNGevity has built the largest grassroots network of events and advocates across the country.

IEEPO 2020 Global Webinar

Sanja Njegic, Switzerland

Sanja Njegic leads the Global Patient Partnership team at Roche and is responsible for facilitating early and systematic engagement with patients across the product lifecycle through industry-leading partnerships with patients.

She is strongly committed to ensuring that patients have a voice in a medicine’s development and she works across departments to find innovative ways to involve patients across the whole lifecycle.

Sanja brings a unique combination of expertise in pharmacy, engineering, business and patient engagement to her role. She has worked in the pharmaceutical industry for over 20 years in different leadership capacities, with nearly 10 years of experience in patient engagement both in Europe and internationally.

 

Pieter van Galen, Netherlands

Pieter van Galen is a freelance trainer and consultant with over 20 years of experience as a speaker and experience as a MS advocate and experience expert.

He was diagnosed with multiple sclerosis (MS) in 2006 and is now an active member of the European Multiple Sclerosis Platform (EMSP) and various steering groups. Through his advocacy work, he hopes to help raise awareness of MS and improve patients’ experiences and empower others.

Pieter is also active in the MS Data Alliance initiative, raising awareness of the value of real-world health data to different stakeholders.

Cathy Scheepers, South Africa

Cathy Scheepers is a qualified public relations and communication practitioner with a degree in health science and social studies. 

She has been working in the healthcare industry for over 20 years, 10 of which have been with The Max Foundation. 

The Max Foundation is a global health, non-governmental organisation working in the oncology landscape, facilitating the donation of medicines to patients in low- and middle-income countries.

Cathy is based in South Africa and currently oversees programmes in 34 African countries She is responsible for identifying opportunities and challenges, developing strategies and implementing actions that will enable patients to have access to diagnostics and donated products.

Ivica Belina, Croatia

Ivica Belina has been the president of the Coalition of Associations in Healthcare (CAH), a Croatian umbrella patient organisation, since 2014.

From 2016, under his leadership, CAH became actively involved as one of the main drivers for bringing in the Croatian National Cancer Control Plan (NCCP). CAH also founded the informal platform for cancer-patient organisations, Onkologija.hr, designed to increase the impact of cancer-patient advocacy on a national level and thus have a greater impact on cancer policy making. Onkologija.hr has 18 cancer-patient representatives in 20 working groups dedicated to making the NCCP work.

From 2017 to 2019, CAH and Onkologija.hr, in collaboration with Roche, organised the Joint Action of Cancer Patient Organisations (JACPO) initiative in Central and Eastern Europe (CEE), gathering prominent cancer-patient representatives from 12 countries from CEE.

The 2019 JACPO meeting was dedicated to the presentation of a cancer-patient survey on patient-relevant outcomes that gathered data from 12 countries in CEE. 

Other CAH activities focus on access to innovative medicines, promotion of clinical trials and, as a broader picture, the protection and promotion of patient rights, obligations, and safety and healthcare policy. As an umbrella organisation, CAH works on bridging the differences among all healthcare-system stakeholders and facilitates building communication. 

Bastian Hauck, Germany

Bastian Hauck is a diabetes advocate, keynote speaker and strategic business consultant with over 10 years of experience in building authentic, self-sustaining patient communities.

He serves on the board of diabetesDE – Deutsche Diabetes-Hilfe, is a Director of the International Diabetes Federation, a Patient Expert with the Innovative Medicines Initiative and Co-Lead of OPEN Diabetes, a patient-led consortium doing research on do-it-yourself artificial pancreas systems and the #WeAreNotWaiting movement.

Bastian is the Founder of #dedoc°, an international network of diabetes advocates, and creator of #docday° and #dedoc° voices, which empowers patient advocates to attend scientific conferences, collaborate with researchers and industry experts and report back to their communities. With Dedoc Labs, he leverages the expertise within the #dedoc° community to help fellow diabetes advocates, patient entrepreneurs, start-ups and Fortune 500 healthcare companies achieve their goals in line with the spirit of the #DOC: Pay it forward.

Donna Walsh, Ireland

Donna Walsh became the Executive Director of the European Federation of Neurological Associations (EFNA) in June 2012. 

Her training is in journalism, but she has worked with patient organisations in the neurological sector – in various roles – since leaving university. This included work with the European Migraine and Headache Alliance and the Migraine Association of Ireland, as well as being a representative for her organisation within the Neurological Alliance of Ireland. 

She oversees the strategic direction of EFNA and leads in the creation and implementation of its annual workplan, projects and activities. Since joining EFNA, Donna has led the development of some of EFNA’s current keynote initiatives, such as its Member of the European Parliament (MEP) Interest Group on Brain, Mind and Pain and the Training Initiatives for Neurology Advocates. She is also active in representing EFNA and the neurology patient community externally, including as a current board member of the European Brain Council and as a member of the European Academy of Neurology’s European Affairs Sub-Committee. 

Donna is part of the Personalised Healthcare Council at Roche. 

Zhengchen Liu, China

Zhengchen Liu is the Co-Founder and Chief Executive Officer of the New Sunshine Charity Foundation, one of the largest charitable organisations in the field of cancer and blood disease in China. 

Having been diagnosed with chronic myeloid leukaemia in 2001 and, unable to source a matching marrow donor, he established the Sunshine Marrow Donor Registry in 2002 to assist all patients to find donors. It is the first and only non-governmental marrow-donor registry in China. In 2009, he Co-Founded the New Sunshine Charity Foundation. 

New Sunshine has provided financial aid of 24,000,000 USD to over 5,000 patients in the past 8 years. The New Sunshine Hospital School is the largest hospital school in the world, with 38 classrooms in 15 Chinese provinces, serving over 2,000 children with leukaemia every year. New Sunshine is the first Chinese charity to sign a co-operation agreement with the World Health Organization and, in 2017, the Foundation co-founded the Associated-Love Project, which aims to develop a pilot programme to facilitate the elimination of disease-caused poverty – the largest cause of poverty in China (over 42%). The Associated-Love Project provides financial aid to children with leukaemia, supports training for physicians, assists medical social workers, evaluates health technologies that are not covered by the National Reimbursement Drug List, and advocates for better health policies. 

Zhengchen has served as session chair or a speaker in many health technology assessment and public health forums, was the laureate of the Peking University Order of Commendation (2004), and the Moral Role Model of Beijing (2007). He was a torch bearer for the Beijing Olympic Games torch relay (2008), and an alumnus speaker in the 120th anniversary ceremony of Peking University (2018). 

 

Virtual World Café

Bastian Hauck, Germany

Bastian Hauck is a diabetes advocate, keynote speaker and strategic business consultant with over 10 years of experience in building authentic, self-sustaining patient communities.

He serves on the board of diabetesDE – Deutsche Diabetes-Hilfe, is a Director of the International Diabetes Federation, a Patient Expert with the Innovative Medicines Initiative and Co-Lead of OPEN Diabetes, a patient-led consortium doing research on do-it-yourself artificial pancreas systems and the #WeAreNotWaiting movement.

Bastian is the Founder of #dedoc°, an international network of diabetes advocates, and creator of #docday° and #dedoc° voices, which empowers patient advocates to attend scientific conferences, collaborate with researchers and industry experts and report back to their communities. With Dedoc Labs, he leverages the expertise within the #dedoc° community to help fellow diabetes advocates, patient entrepreneurs, start-ups and Fortune 500 healthcare companies achieve their goals in line with the spirit of the #DOC: Pay it forward.