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2018 Speakers included:

We are currently pulling together the agenda and speaker list for 2018. If you would like to be part of the research or join the speaking list, please put forward your suggestions to anza@eyeforpharma.com

All Speakers



Victoria Thomas

Victoria Thomas

Head of Public Involvement Programme, NICE

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Victoria Thomas has run the Public Involvement Programme at NICE since 2009, and has been with the Programme since 2001.

Following a degree in Art History, Victoria has worked exclusively in the public and voluntary sector, specialising in healthcare quality improvement activities and in patient and public involvement.  Victoria’s MSc, in Science and Society, concentrated on issues of science communication, science and the public, and lay people’s engagement with evidence-based healthcare initiatives.  Victoria has an interest in shared decision-making, in particular the role of national clinical guidelines as the basis of informed decision-making by both patient and clinician.

Isabelle Bocher-Pianka

Isabelle Bocher-Pianka

Chief Patient Affairs Officer, Ipsen

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Isabelle Bocher -Pianka has over 25 years of international Management experience in the pharmaceutical and consumer goods industries, leading cross-functional and country teams across the globe. From her previous Senior Vice President role , leading the Global Neurosciences Franchise at Ipsen , she was appointed to the new transformation role of Chief Patient Affairs Officer reporting to Global Medical Affairs in March 2016

Her mission at Ipsen is to ensure that “the people we care about are at the center of the decisions we make.”

 She is the internal and external reference patient ambassador, responsible for driving and promoting the patient centricity vision and strategy along the entire value chain of Ipsen’s therapeutic areas (Oncology, Neuroscience and Rare diseases) and across all divisions and geographies.

 In developing Patient Centricity within the company, Isabelle supports the sourcing and internal dissemination of patient’s insights, needs and priorities in order to shape Ipsen’s business to positively impact patient outcomes.

Lars Joensson

Lars Joensson

Vice President and Head of Patient Engagement, Grünenthal Innovation Unit Pain

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Lars Joensson is the Vice President and Head of Patient Engagement at the Grünenthal Innovation Unit Pain. Lars has over 30 years of experience working within patient advocacy, communication and public affairs at many of the largest global pharmaceutical companies including Astrazeneca, Novartis, Bayer and Grünenthal.

At Grünenthal, Lars is responsible for driving forward the company’s mission of establishing the best practice in patient-driven research and development. By understanding the symptoms and outcomes that are important to patients, Grünenthal aims to bring the patient voice to the early stages of clinical development.

Veronica Foote

Veronica Foote

Head of Patient Relations & Communications Europe, Novartis Oncology Europe

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Veronica Foote is Head of Patient Relations & Communications Europe for Novartis Oncology Europe. She has a Focus on patient engagement and patient involvement in healthcare policy, Pharma R&D and RWE outcomes to ensure greater patient access to innovative cancer medicines and Cell & Gene therapies

Lode Dewulf

Lode Dewulf

Chief Patient Officer, Servier

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More information coming soon...

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Anders Lassen

Anders Lassen

Head of Regulatory Science & Advocacy, Lundbeck

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Anders Blaedel Lassen is Director and Head of Regulatory Science & Advocacy at Lundbeck, a global pharmaceutical company highly committed to improving the quality of life of people living with psychiatric and neurological disorders. He is a strong advocate for improving patient and caregiver involvement in the research and development activities related to the medicines lifecycle. Mr. Lassen’s engagement in the field started during his previous position as scientific administrator at the European Medicines Agency (EMA) where he supported the Agency’s work with patients, consumers and healthcare professionals as part of the team developing interactions in the regulatory field with these stakeholders.

Mr Lassen has carried this interested into his present position, further developing Lundbeck’s partnerships with the patient community from a research and development perspective. Most recently, Mr Lassen has been nominated to represent Lundbeck in the Innovative Medicines Initiative PARADIGM (Patients Active in Research and Dialogues for an Improved Generation of Medicines).

Stefan Holmstrom

Stefan Holmstrom

Global Head, HTA Strategy, Astellas

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Stefan has a long experience in the field of patient reported outcomes, Health Economics, market access and HTA strategy.

Stefan currently works with Astellas Pharma in a global strategic role guiding the company in HTA strategy as well as implementing state-of-the-art Patient reported outcome research.

Before joining Astellas, Stefan worked in six (6) different companies, in both large multinational companies as well as small start-up companies. Before focusing on PRO and HTA strategy, he worked in both clinical research, as well as market access functions.

Stefan has lived and worked in Finland, Switzerland, France, Belgium and The Netherlands.

He completed his B.Sc. and M.Sc. in Biochemistry, Chemistry and Biology, and has a degree in Pharmacology.

He obtained a diploma in Health Economics from Stockholm School of Economics and also completed the European Market Access University Diploma (EMAUD) at University Claude Bernard in Lyon.

Stefan has been an active member in ISPOR and published numerous publications in the field of patient reported outcomes (PROs).

Mark Grossien

Mark Grossien

Head of Communications & Patient Advocacy Germany & Pharma Region Europe, Novartis

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Mark Grossien has 20 years’ experience in patient advocacy, communications, digital and social media and policy. He is Head of Communications and Patient Advocacy for Germany and Pharma Region Europe at Novartis. Prior, he was based in Tokyo, Japan where he worked with the local executive team to manage one of the largest reputational crisis in the company’s history. He joined Novartis Global Pharma Communications and Patient Advocacy team in 2008 in Basel, Switzerland. Before, Mark was Director of Communications and External Affairs at the European trade association representing the medical technology industries in Brussels, Belgium. He started his career in global public relations agencies in New York, USA and in Munich, Germany. Mark is a German national and currently lives in Nuremberg, Germany.

Pooja Merchant

Pooja Merchant

Head of External Medical Affairs, Bayer

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Pooja Merchant MD, MPH heads External Medical Affairs at Bayer, a life science company with a more than 150-year history and core competencies in areas of health and nutrition. Driven by her passion for improving healthcare, Pooja applies her expertise at Bayer to create shared value through partnerships with medical, public health and patient communities. Bayer's mission 'Science for a Better Life' not only means a commitment to researching and developing innovative medicines, but also addressing unmet needs by truly understanding the customer. Pooja has been driving a concerted effort around patient engagement in order to continue to deliver on this mission./p>

Jess Mills

Jess Mills

Co-founder, ACT (Adaptive Collaborative Treatments)

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Since her Mother, Baroness Tessa Jowell, was diagnosed with the aggressive and rare brain cancer glioblastoma, Jess has been campaigning for global collaboration between doctors to improve patient care and to make the most innovative treatments available to everyone in the UK, irrespective of income or access. ACT (Adaptive Collaborative Treatments) is the cancer organisation founded by the late Baroness Tessa Jowell, Jess Mills and Dr Jack Kreindler. Their goal is to build the first 'National Grid for Smart Trials and ACTs' where adaptive collaborative treatments should become a standard option in all advanced and incurable cancers, supported by a network of trained patient advocates. ACT's mission is to deliver more hope to patients and their loved ones, support and tools for their doctors, and new data to medical science.

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Ronny Allan

Ronny Allan

Patient Advocate

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Ronny Allan was diagnosed with incurable Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, symptoms of iron deficiency and facial flushing (Carcinoid Syndrome). He is an internationally known advocate for Neuroendocrine Cancer using his 'Patients Included' accredited blog site to spread awareness about this unusual, less common and complex disease

Daniel De Schryver

Daniel De Schryver

Patient Engagement and Advocacy Lead, Europe, Middle East and Africa, Janssen

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Daniel De Schryver joined Johnson & Johnson in 2001 as Director Corporate Communications. In that function, he initially worked in the field of oncology. In 2006 he joined the Janssen teams working in Infectious Diseases where he helped to maintain and enhance the company’s relationships with the HIV Patient Community. Later, he built the external relationships in the field of Hepatitis C, before becoming the Global Therapeutic Area Communications Leader Infectious Diseases and Vaccines. In this function he developed world wide strategic communications and public affairs programs about infectious diseases and global public health.

Daniel has a Master in Romance Philology (Literature) and he started his career as a teacher.

After having worked in communications roles in the car industry for several years, he joined the non-profit sector and became country manager for Médecins Sans Frontières in Bosnia, Croatia and Angola. Back in Europe, he headed the Communications department for the organization. Before joining Johnson & Johnson, he worked at Burson-Marsteller as a consultant on corporate communications.

His personal interests are contemporary art and architecture, politics and meeting people.

Shahid Hanif

Shahid Hanif

Head of Health Data & Outcomes, ABPI

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Shahid leads the ABPI’s health data and outcomes related activities. His role in the ABPI involves cross-functional working with our members, government bodies and relevant stakeholders and he represents our members externally on policy in these areas including implementation of the ABPI’s Big Data Road Map, the use of Real World Data and Evidence, activities relating to Precision Medicine, and outcomes-based health systems. Shahid leads WP3 (Communication and Outreach) of the Coordination and Support Action (DOIT) project of IMI2 BD4BO. Shahid holds a Doctorate in Molecular Biology, a Masters in Information Technology and Bachelors in Biochemistry from the University of Glasgow, with over ten years of experience in the industry working in R&D and Commercial functions.

Nick Passey

Nick Passey

Regional Capability lead International, AstraZeneca

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More information coming soon...

Richard Stephens

Richard Stephens

Consumer Lead and Chair of Consumer Forum, NCRI

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Richard Stephens is a survivor of two cancers and a heart emergency, and has had multiple morbidities and late effects.

He Chairs the NCRI’s Consumer Forum and sits on NHS England's Cancer Patient Experience Advisory Group, as well as strategic groups for NIHR, NHS England, PHE-NCRAS, CQC, MRC CTU, Genomics England, Cancer Research UK, ABPI and others.

Richard was the patient representative on the Independent Cancer Taskforce that produced the (English) National Cancer Strategy, Achieving World Class Cancer Outcomes, and is a founder member of the AllTrials and useMYdata movements. He is joint Editor-in-Chief of BMC’s Journal of Research Involvement and Engagement.

He has worked with industry as an individual and with the NCRI Consumer Forum, and was influential in helping to shape both Cancer Research UK's Industry Partnerships and also the UK's NIHR-Industry Alliances to deliver industry studies in the NHS.

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Carol Munt

Carol Munt

Patient Advocate

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In 1982 Carol was a passenger involved in a road traffic accident in France, resulting in a fractured skull, brain haemorrhage and coma. On return to the UK she was diagnosed with Narcolepsy & Cataplexy as a result of the trauma .

Medication now keeps her condition fairly stable.

She is passionate about Patient & Public Involvement and co-production.

An Honorary Lecturer & Doubleday Affiliate at Manchester Medical School; she is also a member of HQIP Service User Network, Lay member of NHSE Always Events Advisory group, NIHR-NHSE Patient Experience Team, Kent & Medway STP Patient & Public Advisory Group and Social Workforce programme, and recently DeepMind Health Users Group.

She is a Q community member and remains one of HSJ’s Top 50 Patient Leaders.

She is a confident, entertaining and well received public speaker recently addressing audiences at the King's Fund, IHI/BMJ, ADASS/NHS, HC-UK, Westminster Health Forum, NHS South CSU, and the Futures Stage at Expo 2017 amongst others.

Until her move to Kent last year Carol was Co-chair of NHS Thames Valley Patient Experience Operational Group and part of the team for the Leading Together programme.

She worked closely with Health Education Thames Valley on the e-version of the Dementia Handbook for Carers and Care Providers’ having been part of the team behind the original printed version.

She lives in Tunbridge Wells, Kent.

munt12@aol.com twitter @muntma

Tim Scrivener

Tim Scrivener

Solution Architect and Data Scientist, AstraZeneca

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A career IT professional specialising in complex and high-performance computing environments with an extensive background in technical consultancy, data analytics and full-lifecycle systems engineering. I joined AstraZeneca in 2015, following a long career in development of research and operational solutions in defence and commercial domains. With AstraZeneca I wanted to focus on the design and development of analytics and systems to support early clinical development, with a strong emphasis on machine learning and data-driven decision support. It is a calling which has provided many hugely absorbing opportunities to work closely with passionate, expert colleagues to positively influence the patient experience.

Jeremy Taylor

Jeremy Taylor

Chief Executive, National Voices

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Jeremy Taylor has been chief executive of National Voices since 2009. The national coalition of health and care charities in England has grown under his direction as a leading, independent champion for patients, carers and the voluntary sector.

Jeremy provides a strategic voice on person centred care, the engagement of citizens in decisions about health, and the role of the voluntary and community sector. He acts as an expert advisor, writer, commentator, media spokesman, conference speaker and facilitator of leadership development.

In 2017 he was included for the 7th year running in the Health Service Journal annual list of 100 people with the greatest influence in health.

Jeremy joined the voluntary sector in 2007 and was previously a senior official at HM Treasury.

Meni Styliadou

Meni Styliadou

VP Government Affairs & Public Policy, Europe & Canada, Takeda

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Meni joined Takeda on the 1st of October 2015 as VP Public Policy and Government Affairs for Europe & Canada (EUCAN).

Her focus is to help Takeda take advantage of public policy trends and create win-win business models for society and the company.

Prior to joining Takeda, Meni worked for 9 years for Novartis in several roles in public policy and ethical leadership.

Prior to that, Meni held a number of international positions in both the public and private sectors focusing on how to accelerate broadband in Europe and how to create a public policy environment that would allow Europe to enter successfully into the digital era.

Meni started her career in the European Commission in 1991 as a legal expert focusing on telecom law and policy.

She studied law in Greece and Belgium and she specialised in anti-trust law.

Jenny Royle

Jenny Royle

Patient-centricity Program Lead, digitalECMT, Cancer Research UK and The Christie NHS Foundation Trust

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After finishing my PhD in Pharmacology at the University of Cambridge, I moved into the Pharmaceutical industry. There I spent many years working at all steps of clinical development, from the first use of a drug in people, through to monitoring safety after a drug is authorized for general use. I have expertise in a wide range of disciplines including clinical science, regulatory affairs, data visualization and analysis, risk monitoring and management strategy, and patient-focused research. I’m now in the digital Experimental Cancer Medicine Team (digitalECMT) for Cancer Research UK, Manchester Institute, and The Christie NHS Foundation trust. Our mission is to innovate and apply digital science to transform decision-making in early clinical trials and the patient's role. I lead the projects focusing on patients and their loved ones. Aiming to ensure that they have the choice to be an active contributor and partner in their own care, as well as a ‘co-scientist’ in new and innovative research. I’m always looking to develop new and innovative approaches to ensure we deliver this vision.

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Oleksandr Gorbenko

Oleksandr Gorbenko

Global Patient Affairs Medical Lead, ViiV Healthcare

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Dr Oleksandr Gorbenko is an expert in public health, patient advocacy and engagement with overall 18 years experience in pharma. He graduated as a medical doctor (general practice) in O.Bogomolets National Medical University and Shupyk National Medical Academy of Postgraduate Education and later worked on his PhD dissertation in the Ukrainian Institute of Public Health MOH. His experience across pharma includes several medical and commercial roles in representative offices of big biopharma companies (Nycomed/Takeda, Richter Gedeon, GSK) as well as senior global medical roles at GSK and ViiV Healthcare headquarters in the UK. He has an additional experience with UN/UNFPA on women empowerment and combating gender-based violence, stigma and discrimination. Over the last 5 years Dr Gorbenko has been developing necessary capacities/capabilities within corporate patient affairs focusing on getting insights, advice and information from patients throughout the Medicine Development Continuum and a disease continuum/individual experience, collaboration with patient organisations, substantiation and inclusion of the specific PRO/PCO measurements, KPIs and standards of patient centricity for big pharma and other programmes. ViiV Healthcare has been broadly recognised as a truly patient-centric company (Number 1 amongst 47 biopharma companies over the last 5 years by PatientView Corporate Reputation Ranking) and reliable partner of HIV community.

Christoph Thalheim

Christoph Thalheim

Director External Affairs, European Multiple Sclerosis Platform (EMSP)

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Christina Donatti

Christina Donatti

Global Head RWE Data & Policy, UCB

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Christina Donatti recently joined the Real-World Evidence (RWE) Practice in the newly created role of Global Head of RW Data & Policy. Christina is leading the consolidation of UCBs RWD strategy, evolution of the RWD portfolio and its use in local, regional and global RWE projects. Encompassed in this role, Christina also navigates external public-private partnerships and other ways for UCB to successfully utilise current RWdata sources and support the development of new ones as the business moves forward in its evidence generation strategy.

Christina brings over 15 years of outcomes research experience, both in consultancy and pharma. Christina successfully lead the implementation of the RWE business model to the UK OpCo whilst acting as the Senior HEMAR Manager for the Neuroscience portfolio. Following these two roles she then moved into the IMI Lead for the EMEA Strategic Organisation of Janssen Cilag. Within her remit, Christina was also supporting their RWE hub to develop robust Evidence Generation Plans, advising on study design and methodologies for projects feeding HTA submissions and other Market Access challenges across all therapeutic areas. Before joining Janssen, Christina worked for four years at IMS Health in the UK and Australia, working on developing & managing international retrospective database outcomes research (real world evidence projects), prospective observational research projects, and lead the development of the systematic review business unit within their HEOR team. Christina also worked at Oxford Outcomes (now ICON) for 4 years, developing and validating Patient Reported Outcome (PRO) measures and providing recommendations on the use of PROs in clinical trials at Phase II and III and to support FDA labelling claims. Christina originally qualified and worked as a lawyer in Western Australia and Sydney before returning to study and completing a Doctor of Clinical Psychology at Sydney University and moving into consulting.

Teresa Ferreiro

Teresa Ferreiro

Patient Advocate

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Teresa is a certified professional coach, cancer survivor, business facilitator and speaker. From her breast cancer experience (36), she learned that patients need to be empowered so they can take control of their lives. Health care professionals are a key entry point to achieve this goal. She applies coaching and personal development training with them and with patients for this

Vanessa Pott

Vanessa Pott

Director, Patient Advocacy & Strategic Partnerships, Global Healthcare Government & Public Affairs, Merck Group

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Chenglong Han, MD, PhD

Chenglong Han, MD, PhD

Director, Patient-Reported Outcomes, Global Market Access, Janssen

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Chenglong Han, PhD, MD, is a Director in the global market access and patient-reported outcomes group in the Janssen Pharmaceutical Companies of Johnson & Johnson, supporting new drug development in the immunology area, for more than 18 years. Chenglong co-authored more than 40+ research papers in the peer-reviewed journals and presented numerous posters in scientific conferences in health economics and outcomes research field. Before Joined Janssen, Chenglong was a post-doctoral fellow in the National Institutes of Health (NIH) and conducted researches in molecular epidemiology, virology and the relationship of Human Papilloma Virus (HPV) infection and risk of cancer. Chenglong has a PhD in epidemiology and MD in preventive medicine.

Geoff Rollason

Geoff Rollason

Patient Experience and Service Director - Oncology UK, Pfizer

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David Yeandle, OBE

David Yeandle, OBE

Member, MS in the 21st Century Patient Steering Group

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David was diagnosed with relapsing remitting MS in 2010, having experienced symptoms up to 3 years prior to this. While many people find an MS diagnosis a difficult and confusing time due to a lack of general awareness around the disease, David was unfortunately all too familiar with MS, having seen his sister diagnosed with the disease almost 30 years previously. Using his existing knowledge and experience of MS, David decided to approach his diagnosis with a positive attitude and the motto ‘I will manage my MS rather than allow it to manage me’; while his illness did eventually force him to take early retirement from his demanding job as Head of Employment for an organisation representing the UK’s manufacturing industry, he has since flourished as a part time consultant performing a variety of roles, including serving as the President of the United Nations’ Staff-Management Committee. David is a new addition to the MS in the 21st Century Steering Group having joined in July 2017 and as a result of his own experiences and expertise is a passionate advocate of helping MS patients to stay in employment.

Lise Pape

Lise Pape

Carer & Founder, Walk with Path

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Lise Pape is the Founder of Walk With Path and in charge of business development, strategy and partnership. Lise holds a BSc in Human Biology from King’s College London and a double masters MA/MSc in Innovation Design Engineering from Imperial College London and the Royal College of Art. In addition, Lise has worked in finance for J.P. Morgan, where she held roles in Product Management, Network Management, and was responsible for client and stakeholder relationships internally and externally. She has also worked in advertising for AOL's Advertising.com, where she was a Delivery Manager responsible for the Nordic region. Additionally, Lise has worked as Investment Manager at the Ministry of Foreign Affairs of Denmark at the Royal Danish Embassy in London, where she was responsible for job creation into Denmark within life sciences and clean technologies. 

Lise founded Walk With Path in 2014, based on her developments during Innovation Design Engineering, and her personal experience with Parkinson’s suffered by her father. The company launched it's first product in 2017; Path Finder, a visual cueing shoe attachement to help those with Parkinson's. The second product, a haptic feedback insole to improve balance; Path Feel, is in development. 

Dom Raban

Dom Raban

Founder, Xploro

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Dom Raban has been creating ‘stuff’ for nearly 40 years, from punk fanzines in the 1970s to content for emerging technology platforms now. He’s been in the digital space since the start, building his first website in 1995 and his first 3D virtual environment in 1996. His current agency, Corporation Pop, was launched in 2007 and was one of only 35 companies worldwide to be accredited as Gold Solution Providers for Second Life. In those heady days of virtual worlds they delivered several ground-breaking corporate and educational projects for clients including EMI, BP, the NHS and Manchester Business School.

Since 2010 they have focused on Unity 3D development and have built immersive virtual environments for all sorts of use cases, from connected TV applications to avatar-based software that helps young people with mental health issues. For the last three years they have focused on bringing their experience with immersive 3D spaces to virtual and augmented reality.

Currently they are working on several AR, AI and VR projects including ‘Xploro’, an app for child patients that helps reduce the stress associated with hospitalisation by increasing familiarisation with staff, environments and procedures.

Dom is an awarded member of D&AD and a member of the VRARA Digital Health Committee.

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Emma Lawton

Emma Lawton

Devices Apps & Gadgets Strategist, Parkinsons UK

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More information coming soon...

Kenza Seddik

Kenza Seddik

Patient Experience and Value Lead , UCB

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Boglarka Szegvari

Boglarka Szegvari

Global Head of Access Strategy for non-drug solutions and new populations, UCB

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Andrew Warrington

Andrew Warrington

Patient

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For over 35 years, Andrew Warrington has been told that a cure to type 1 diabetes cannot be more than 10 years away. While academia and pharma continue to work on finding a cure, Andrew decided in 2015 he is unable to wait any longer for current treatments to deliver better outcomes. He decided to take matters into his own hands.

Trishna Bharadia

Trishna Bharadia

Patient Advocate, eyeforpharma Award Winner

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Trishna Bharadia is a multi-award winning patient advocate for chronic illness, hidden disability and multiple sclerosis. She was diagnosed with MS in 2008 and despite having a full time job as a translator, uses her spare time to work with various stakeholders, including pharma, clinicians and the third sector, to improve support, services and patient engagement in the healthcare arena. In 2015, she put MS on the national map when she was chosen to feature in a special four-part edition of Strictly Come Dancing. It was aired on BBC1 and she was chosen specifically because of her advocacy work and her approach to the MS diagnosis. She’s a vlogger, writer and sought-after speaker, as well as advising on projects, research proposals and diversity strategies, and is regular contributor in the media for health-related issues. She’s also a patron/ambassador for several charities and is the current holder of the EyeforPharma Patient Advocate (Europe) Award. TWITTER: @TrishnaBharadia

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Pedro Oliveira

Pedro Oliveira

Professor of Technology and Innovation Management, Copenhagen Business School, and Leader of Patient Innovation

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Pedro Oliveira is Professor at Copenhagen Business School with special responsibilities in healthcare innovation; He is also Academic Fellow at the Cornell Institute for Healthy Futures at Cornell University; Founder and President of Patient Innovation; and co-founder of PPL Crowdfunding. Pedro is Principal Investigator of several research initiatives.

Previously he was a Professor at Católica-Lisbon School of Business and Economics, where, among other, he served as Senior Associate Dean for Faculty and Research, Academic Director of the Lisbon MBA, and Director of the doctoral program in Technology Change and Entrepreneurship. He was also an International Faculty Fellow at MIT Sloan School of Management and Advisor to the Ministry of Science, Technology and Higher Education.

He received his Ph.D. in Operations, Technology and Innovation Management from the University of North Carolina at Chapel Hill; hisM.Sc. in Operations Research and Systems Engineering; and his 'licenciatura' in Naval Engineering from Instituto Superior Técnico. He also completed some advanced training at Harvard Business School and Northwestern University’s Kellogg School of Management.

Niklas Hedberg

Niklas Hedberg

Chair of Executive Board, EUnetHTA

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Niklas Hedberg is the Chief Pharmacist at the governmental authority, the Dental and Pharmaceuticals Benefits Agency (TLV), in Sweden.

Since May 2018, Niklas is the Chair of the EUnetHTA Executive Board. He has been a member of the Executive Board and the TLV lead partner in EUnetHTA, leading WP 3 – Evaluation since June 2016.

Niklas has been involved in the national pricing and reimbursement decision making for pharmaceutical products since 2001 and for medical devices since 2009. He has a broad experience of different aspects of value based evaluation. Since 2009 Niklas has had a special interest in joint scientific advice.

Between August 2009 and March 2014 Niklas was the Head of Department in the Department for Pharmaceutical Submissions at TLV. Before that he held positions as investigator, medical assessor and project leader in the agency.

Before entering the TLV in 2001 Niklas worked a couple of years as a sales representative within the pharmaceutical industry.

Carole Sian Scrafton MBS, BA (hons)

Carole Sian Scrafton MBS, BA (hons)

Patient Advocate

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  • Disabled
  • Health and Patient advocate, ambassador, for all things related to chronic /invisible illnesses, volunteer
  • Co-founder and Founding Five member of Fibro Flutters
  • Fibro Flutters Group Co-ordinator and social media & events co-ordinator Volunteer Admin helping to share as much up to date information via varying social media platforms while supporting people with Fibromyalgia, Me/CFS, Chronic illness, Chronic Pain, EDS/HMS, Mental Health & other invisible illness.
  • Studied Global, Corporate and General Business Management | MBS | University of Sunderland
  • Studied Glass & Ceramics at University of Sunderland | BA (hons)
  • I love socialising, theatre & travelling, gaming and messing with art, photography, 3D Paint and phototastic
Paola Antonini, MD, PhD

Paola Antonini, MD, PhD

AISC Scientific Committee Member, Head of Clinical Research & Training Initiatives, AISC

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Dr Antonini received her M.D. from the University of Rome “La Sapienza” Magna Cum Laude, with Top Honors in all examinations. She has a PhD in Clinical Pharmacology. In more than 30 years of experience in Pharma Industry Dr Antonini has played a key role in many successful programs of drug development, capitalizing on her scientific leadership and on-the-job experience in the designing, implementation and interpretation of clinical trials. Among Dr Antonini’ accomplishments are a substantial contribution to the clinical development of a number of products in the cardiovascular, internal medicine, metabolism, respiratory, oncology and neuroscience area. Dr Antonini has established valuable relationships and collaborations with many key scientific leaders in a number of therapeutic areas and this allowed her to build an innovative, strong partnership with Italian and International Academia in the field of Clinical Research. As a peer interlocutor of Academy members Dr Antonini has been invited to be Lecturer at Master in Clinical Research organized by the Universities of Florence, Ferrara, Rome (Catholic University , University of Tor Vergata and University of Roma3), and Chieti. She authored several peer-reviewed articles and has been invited as speaker in International and National events in the areas of Pharmaceutical Medicine, Methodology of clinical trials and Pharmacology. In 2018 she joined AISC where she serves as Member of AISC Scientific Committee and Head of Clinical Research & Training Initiatives.

Emma D’Arcy-Sutcliffe & Delilah D’Arcy

Emma D’Arcy-Sutcliffe & Delilah D’Arcy

Patient & Patient Advocate

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Emma D’Arcy-Sutcliffe is a global leader in patient engagement and innovation which she describes as ‘a role of great privilege’ through two decades as a medical writer communicating and lobbying about patient issues and the merits of socialised health.

Delilah D’Arcy is Emma’s daughter and hopes to be an actor! When she’s not learning lines or studying she’s also navigating through learning how to self-inject daily as she has growth hormone deficiency. Delilah enjoys describing what it’s is like to have a ‘chronic condition’ and highlight the challenges of being a smart kid constantly as risk of being undermined because you’re small!

Emma and Delilah will join a panel discussing transitional needs from paediatric care to young adults embracing self-care.

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Sarah Griffiths

Sarah Griffiths

Communications Consultant, Patient Engagement, Oxford PharmaGenesis

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Sarah Griffiths has over 10 years of medical communications experience across multiple deliverables and disease therapy areas, including expertise in neuroscience, immunology, oncology, ophthalmology and rare diseases. In her current patient engagement role at Oxford PharmaGenesis, she champions patient participation and communication throughout the drug development continuum.

Oxford PharmaGenesis is an award-winning HealthScience communications consultancy providing services to the healthcare industry, professional societies and patient groups through specialist practices. Oxford PharmaGenesis puts improving patient health first, a principle they have followed since the company was founded in 1998.

Kathy Oliver

Kathy Oliver

Chair and Co-Director, The International Brain Tumour Alliance (IBTA)

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As well as working at the IBTA, which she co-established in 2005, Kathy is Vice-Chair of the European CanCer Organisation Patient Advisory Committee; member of ESMO’s Patient Advocacy Working Group; member of the Guidelines and Reported Outcomes Committee of the US Society for Neuro-Oncology; founding member of Rare Cancers Europe; former patient representative - the European Commission’s Expert Group on Cancer Control; member of the NCRI Brain Tumour Clinical Studies Group subgroup on Palliative/Supportive Care; member of the Novartis ePALCO project; Steering Committee member of the All.Can initiative (engaging policymakers on the need to improve efficiency of cancer treatment, care and support, to achieve better outcomes for patients).

Kathy is a frequent speaker at international neuro-oncology and cancer conferences.

Kathy’s son, Colin, was diagnosed with a brain tumour in 2004 at age 24 and passed away, at age 32. She cites her son’s “incredible courage, determination and fortitude” as the driving force and inspiration behind her involvement in the international brain tumour and rare cancers community.

Clare Moloney

Clare Moloney

Programme Insights and Design Lead, IQVIA

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A health psychology specialist with a strong academic and commercial skill set, Clare has extensive experience in health behavioural research, intervention design and evaluation. For over 8 years, Clare has designed and overseen the delivery of global patient support services across a wide range of therapeutic areas and led strategic product design to promote sustained health behaviour change.

Jim O’Donoghue

Jim O’Donoghue

President, S3 Connected Health

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More information coming soon...

Paula Williamson

Paula Williamson

Chair, COMET Management Group

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Paula Williamson is Professor of Biostatistics, and was Head of the Department of Biostatistics from 2002 until 2018. She was recently appointed as APVC for Strategy and Policy in the Faculty of Health and Life Sciences. She is Director of the MRC North West Hub for Trials Methodology Research (HTMR) and co-Director of the Clinical Trials Research Centre (CTRC). Paula chairs the University of Liverpool’s Health and Biomedical Informatics Group and is a member of the Farr Institute through HeRC North. Paula co-founded and has led the COMET (Core Outcome Measures in Effectiveness Trials) Initiative since 2010. She was appointed as an NIHR Senior Investigator in 2014, gave the Bradford Hill Lecture in 2017, and is current Chair of the MRC HTMR Network. She was elected to the Academy of Medical Sciences in 2018.

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Alexandre Koloskov

Alexandre Koloskov

Digital Transformation Manager, Accenture

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I am a digital transformation practitioner with 6 years of experience in consulting life sciences organisations on the use of new technologies, organisational principles and work practices to engage stakeholders. My efforts have been concentrated in the commercial and medicines development space.

I am passionate about changing the way people experience healthcare. This is changing fundamentally with the introduction of new methods, treatments, services and socio-economic models that are all underpinned by digital technologies in some way or another. Human-centred design principles and design culture are critical to the success of these new arrangements of people, process and technology.

Anita Janda

Anita Janda

Director within Accenture’s Life Science’s Strategy, Accenture

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A Director within Accenture’s Life Science’s Strategy practice. A medical doctor by training, clinical leader of Accenture’s healthcare clinical and operational consulting engagements and the UKI patient services lead working with Pharma.

Anita is experienced in redesigning healthcare services to improve patient outcomes, ensure high-quality services and reduce cost. Anita has worked on many aspects of health system/payor/provider strategy and health system delivery, in particular initiatives to redesign care across care pathways, restructure or reconfigure providers to drive quality and cost improvements. Anita is passionate about patient empowerment working with Pharma to develop their strategy and services beyond the drug.

Axel Vanderperre

Axel Vanderperre

Founder, UTOPIA_BXL

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Axel Vanderperre’s work over the last two years has focussed on projects that add value to people living with HIV (PLWHIV), in conjunction with medical professionals and non-government organisations; a change in direction which occurred following a long career of more than 30 years in the medical and pharmaceutical industry in research and development, clinical development and communications. Specifically, he focuses on strategic and operational level targeting of the needs of PLWHIV, which he translates into operational projects such as surveys, medical education, self-management and empowerment of patients, and medical conferences.

He is a member of the Positive Council, Plate-Forme Prévention Sida – Action Plus and ExAequo, as well as the Founder of a not for profit organisation, UTOPIA_BXL, which focuses on needs and expectations of ageing PLWHIV in order to create educational projects

He is also a member of the faculty for the Belgian Research AIDS & HIV Consortium (BREACH), a research organisation of HIV physicians for the development of the yearly symposium “What’s new in HIV?”. His areas of focus here include addressing the needs of aging PLWHIV and their caregivers, treating patient centric care, improvement of care quality and the improvement of quality of life in the lesbian, gay, bisexual and transgender (LGBT) community, for those over 50 years old and more generally.

Within this context Axel Vanderperre decided to work on strategic & operational level targeting the Persons Living with HIV – PLHIV needs and translate it with operational projects (such as surveys, medical education, self-management & empowerment of the patient, medical conferences ...).

The focus is:

  • To better answer the real needs of the HIV ageing patients, care givers and HIV health care professionals.
  • To position the patient as ‘central’ within the treatment and care (empowerment). - To improve the quality of care of PLHIV by working together with healthcare professionals.
  • To improve the quality of life of LGBT 50+ seniors in partnership with other organizations, to support and defend their rights, to foster a better understanding of aging in all communities and to promote positive images of LGBT life
  • To create of educational projects and services within a multidisciplinary approach to promote health and well-being and motivate LGTB seniors to take better care of themselves (eg HIV and aging) by providing accessible, direct and practical support services.
Leona Probst

Leona Probst

Patient Affairs Manager Oncology, Takeda

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Leona Probst is Patient Affairs Manager Oncology for Germany at Takeda, responsible for building relationships with patient organizations. She joined Takeda in January 2017 and is based in Berlin. Prior to Takeda, Leona worked as Senior Medical Manager at a healthcare communications agency gaining communication experience on a broad range of projects for several pharmaceutical companies for over 5 years. Leona has a Master of Science in biomedicine.

Matt Eagles

Matt Eagles

Patient & Patient Advocate

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I have lived with Parkinson’s for 42 years. My passion is raising awareness of patient sentiment, encouraging meaningful dialogue between pharma, HCPs and patients themselves, so outcomes benefit everyone. I have spoken at Wired Health 2017, Financial Times HealthTech Europe, Digital World Health Summit and The British Neuroscience Winter Symposium, Founders Forum, Mindshare Huddle and the Virtual Futures salon. I go by the mantra: ‘never pre-judge and never discount opinion without listening first , everyone has a story to tell and something valuable to contribute if you let them.‘

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Rupert Potter

Rupert Potter

Commercial Director, iWantGreatCare

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Rupert has a long distinguished career in the Healthcare and Pharmaceutical sector. Rupert has worked for the NHS, Organon, Astra Zeneca, Doctors Net UK and latterly in Digital Healthcare focussing mainly on patients, patient technology and experiences.

Recently Rupert joined iWantGreatCare as their Commercial Director bringing his knowledge of working with large pharmaceutical companies to develop and implement patient outcome focussed programmes. Our ethos is “to improve the care for the next patient”.

Patient Leaders



Steering Board #impatientconf



Erin Moriarty Wade

Erin Moriarty Wade

Rare Disease Carer

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I’m a freelance writer specializing in healthcare. With nearly 20 years of experience, my work has appeared in publications ranging from Atlanta Business Chronicle to Phnom Penh Post and the San Francisco Chronicle. I also do content writing for businesses, and I have done extensive work for hospital websites. As the mom of a child with a rare disease, I am especially passionate about the patient experience. I have a unique perspective as a long-time health writer who found myself unexpectedly navigating a complex disease when my daughter became sick.

I am a graduate of American University’s School of International Service in Washington, D.C., and I earned a master’s degree in journalism from Columbia University in New York City.

Matt Eagles

Matt Eagles

Patient & Patient Advocate

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I have lived with Parkinson’s for 42 years. My passion is raising awareness of patient sentiment, encouraging meaningful dialogue between pharma, HCPs and patients themselves, so outcomes benefit everyone. I have spoken at Wired Health 2017, Financial Times HealthTech Europe, Digital World Health Summit and The British Neuroscience Winter Symposium, Founders Forum, Mindshare Huddle and the Virtual Futures salon. I go by the mantra: ‘never pre-judge and never discount opinion without listening first , everyone has a story to tell and something valuable to contribute if you let them.‘

Margot Vanfleteren

Margot Vanfleteren

Patient Advocate

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Throughout the years I've attended various congresses and other pharma-oriented events. Each time it struck me how people talked about patients and aimed to improve patient experience without including patients. For that reason I've tried to advocate for patient inclusion at conferences and in pharma events. The concept of im-patient aligns with my values and vision for healthcare. Being able to make a succes out of the im-patient conference together with other patients would be amazing!

Simon Stones

Simon Stones

Patient Advocate

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I am a young person with direct experience as a patient with multiple chronic conditions and as a carer. I'm also a vocal advocate on a national and international level for people with musculoskeletal conditions, speaking up for better care and support. I have experience of working at board level on two charities, and have worked and continue to work with industry in a consultancy capacity to better involve patients in research and innovation.

Cecile Tardy-Srinivasan

Cecile Tardy-Srinivasan

Patient Advocate

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More information coming soon...

Richard Stephens

Richard Stephens

Patient Carer

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Inês Alves

Inês Alves

Patient Advocate & Carer

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Paula Williamson

Paula Williamson

Professor of Medical Statistics, University of Liverpool

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Speakers



Lise Pape

Lise Pape

Carer & Founder, Walk with Path

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Lise Pape is the Founder of Walk With Path and in charge of business development, strategy and partnership. Lise holds a BSc in Human Biology from King’s College London and a double masters MA/MSc in Innovation Design Engineering from Imperial College London and the Royal College of Art. In addition, Lise has worked in finance for J.P. Morgan, where she held roles in Product Management, Network Management, and was responsible for client and stakeholder relationships internally and externally. She has also worked in advertising for AOL's Advertising.com, where she was a Delivery Manager responsible for the Nordic region. Additionally, Lise has worked as Investment Manager at the Ministry of Foreign Affairs of Denmark at the Royal Danish Embassy in London, where she was responsible for job creation into Denmark within life sciences and clean technologies. 

Lise founded Walk With Path in 2014, based on her developments during Innovation Design Engineering, and her personal experience with Parkinson’s suffered by her father. The company launched it's first product in 2017; Path Finder, a visual cueing shoe attachement to help those with Parkinson's. The second product, a haptic feedback insole to improve balance; Path Feel, is in development. 

Dom Raban

Dom Raban

Founder, Xploro

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Dom Raban has been creating ‘stuff’ for nearly 40 years, from punk fanzines in the 1970s to content for emerging technology platforms now. He’s been in the digital space since the start, building his first website in 1995 and his first 3D virtual environment in 1996. His current agency, Corporation Pop, was launched in 2007 and was one of only 35 companies worldwide to be accredited as Gold Solution Providers for Second Life. In those heady days of virtual worlds they delivered several ground-breaking corporate and educational projects for clients including EMI, BP, the NHS and Manchester Business School.

Since 2010 they have focused on Unity 3D development and have built immersive virtual environments for all sorts of use cases, from connected TV applications to avatar-based software that helps young people with mental health issues. For the last three years they have focused on bringing their experience with immersive 3D spaces to virtual and augmented reality.

Currently they are working on several AR, AI and VR projects including ‘Xploro’, an app for child patients that helps reduce the stress associated with hospitalisation by increasing familiarisation with staff, environments and procedures.

Dom is an awarded member of D&AD and a member of the VRARA Digital Health Committee.

Emma Lawton

Emma Lawton

Devices Apps & Gadgets Strategist, Parkinsons UK

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More information coming soon...

Andrew Warrington

Andrew Warrington

Patient

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For over 35 years, Andrew Warrington has been told that a cure to type 1 diabetes cannot be more than 10 years away. While academia and pharma continue to work on finding a cure, Andrew decided in 2015 he is unable to wait any longer for current treatments to deliver better outcomes. He decided to take matters into his own hands.

Pedro Oliveira

Pedro Oliveira

Professor of Technology and Innovation Management, Copenhagen Business School, and Leader of Patient Innovation

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Pedro Oliveira is Professor at Copenhagen Business School with special responsibilities in healthcare innovation; He is also Academic Fellow at the Cornell Institute for Healthy Futures at Cornell University; Founder and President of Patient Innovation; and co-founder of PPL Crowdfunding. Pedro is Principal Investigator of several research initiatives.

Previously he was a Professor at Católica-Lisbon School of Business and Economics, where, among other, he served as Senior Associate Dean for Faculty and Research, Academic Director of the Lisbon MBA, and Director of the doctoral program in Technology Change and Entrepreneurship. He was also an International Faculty Fellow at MIT Sloan School of Management and Advisor to the Ministry of Science, Technology and Higher Education.

He received his Ph.D. in Operations, Technology and Innovation Management from the University of North Carolina at Chapel Hill; hisM.Sc. in Operations Research and Systems Engineering; and his 'licenciatura' in Naval Engineering from Instituto Superior Técnico. He also completed some advanced training at Harvard Business School and Northwestern University’s Kellogg School of Management.

Emma D’Arcy-Sutcliffe & Delilah D’Arcy

Emma D’Arcy-Sutcliffe & Delilah D’Arcy

Patient & Patient Advocate

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Emma D’Arcy-Sutcliffe is a global leader in patient engagement and innovation which she describes as ‘a role of great privilege’ through two decades as a medical writer communicating and lobbying about patient issues and the merits of socialised health.

Delilah D’Arcy is Emma’s daughter and hopes to be an actor! When she’s not learning lines or studying she’s also navigating through learning how to self-inject daily as she has growth hormone deficiency. Delilah enjoys describing what it’s is like to have a ‘chronic condition’ and highlight the challenges of being a smart kid constantly as risk of being undermined because you’re small!

Emma and Delilah will join a panel discussing transitional needs from paediatric care to young adults embracing self-care.

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Event Presentations • Event Audio • On Demand Subscription