9th Global Patients Congress

Co-Creation in Innovative Healthcare during COVID-19

 

September

16 - 17 September 2020
8:30 to 17:00 BST

NO TRAVEL NEEDED

NO TRAVEL NEEDED

LEARN & NETWORK

LEARN & NETWORK

About GPC 2020

The Congress is the International Alliance of Patients’ Organizations (IAPO)’s flagship event where we bring together our global membership with a variety of high-level global healthcare stakeholders to discuss urgent needs in our advocacy efforts in driving progress for healthcare that is designed, organised, and practised with the patient at the centre.

The 9th Global Patients Congress (GPC 2020) will allow you to access inspiring keynotes and visionary thinking sessions reflecting on the defining health crisis of COVID-19 and its impact on the global patient community. The Congress will be a moment for focused conversation on the next steps in health system strengthening and preparedness through patient led and co-created innovative solutions in 2020 and beyond. GPC 2020 will also mark the annual World Patient Safety Day with sessions highlighting the theme so aptly underscored by the COVID-19 pandemic that without health worker safety, there can be no patient safety. It will be an exciting two days.

Bringing together patient advocates from all disease areas from across the world, it will be a moment that celebrates patient advocacy and patient-centred healthcare. Started in 2005, the bi-annual Global Patients Congress will continue to facilitate its intended outcome of fostering greater connection among delegates and collective action around urgent needs.

 

A special milestone

GPC 2020 will also be a moment to mark IAPO’s 21st Anniversary. IAPO was formed 21 years ago with the vision of ensuring patients are at the centre of healthcare throughout the world. At this 9th Global Patients Congress, we have come of age. Today, we are an optimistic, confident and a well-informed global patients' movement that is integrated into the global healthcare policy and decision making infrastructure. We invite you to join us as we mark our 21st anniversary!

 

Why should you attend GPC2020?

During the event, participants can expect to:

Programme

GPC 2020 - Co-Creation in Innovative Healthcare during COVID-19


DAY 1 – 16 September 2020

 9:00 BST

Opening Ceremony

Dr Ratna Devi, IAPO Chair

Dr. Ratna Devi is the CEO and Co-founder of DakshamA Health and Education, an organisation that is dedicated to working for access to health, patient education and advocacy. DakshamA aims to create a network of caregivers and patient groups, and work with them on knowledge sharing as well as providing essential feedback for managing long term and chronic diseases. She leads a cross disease Patient Alliance in India called Indian Alliance of Patient Groups (IAPG), Board member HIA (Healthy India Alliance – the National NCD Alliance in India) and I – ORD (Indian Organisation for Rare Diseases). She holds an MBBS degree from Sambalpur University and a dual MBA from SYMBIOSIS and Manipal Institute of Distance Education. Dr. Devi also holds advisory positions at several NGOs and has contributed to research as well as publications.

Dr Neda Milevska-Kostova, IAPO Vice-Chair

Dr Neda Milevska-Kostova is president of Studiorum, a regional think-tank working on research and policy aspects of health and wellbeing in Europe. Neda has over 20 years experience in health research, policy and patient advocacy. She holds a MSc in functional pharmaceutics (University of Tokyo), MA in public policy (University of Pittsburgh, USA), and a PhD in public health (University of Sheffield, UK).

Neda is also a Vice-president of Health First Europe, an umbrella organization based in Belgium working on improving access to innovative health technologies in Europe. In 2018, she was awarded the title Primarius by the Minister of Health for exceptional and long-term commitment to the advancement of health system and population health in Macedonia.

Karen Alparce-Villanueva, IAPO Secretary and Congress Committee Chair

Karen Alparce-Villanueva is currently a Board Member and Secretary of the International Alliance of Patient Organizations (IAPO) as well as Board Member and Treasurer of the Philippine Alliance of Patient Organizations (PAPO). She has over 30 years experience in the private sector specializing in communications & policy work, 20 of which were spent in the healthcare industry. Karen left her corporate job in 2015 to devote her long experience in health advocacy to advancing patient rights. Karen also served in government as Board Member of the Philippine Health Insurance Corporation (Philhealth) and as consultant for the Health Promotions and Communication Services of the Department of Health (DOH). She was previously External Affairs Director of MSD and was also Corporate Affairs Director of Pfizer Philippines. Karen also runs a communications consulting firm called Health PRx Communications Inc.

 9:15 BST

Keynote Speech: WHA 73.1 and Future Proofing Health Systems: Preparedness for Next Phase of Pandemic COVID-19 and Patient Co-Creation

The programme will start with examining the World Health Assembly (WHA)’s Resolution 73.1 - COVID-19 Response that requires Member States to future proof their health systems by preparing for the next phase/s of the COVID-19 pandemic.

Member States in national unity and global solidarity must act as whole-of-government, whole-of-society and whole-of-patient community to first strengthen their public health (surveillance, suppress, mitigate, test and trace, quarantines and PPE), then ensure the patients receive timely and appropriate treatment (safe, quality, acceptable) that is accessible (medicines, health devices and services). Lastly, to strengthen the long-term governance, informatics, human resources (health workers), health financing, medicines and health technologies, health service delivery, user, patient, and society participation.

Dr Soumya Swaminathan, MD, Chief Scientist, World Health Organization

Dr. Soumya Swaminathan has been appointed Chief Scientist heading the division created to strengthen the organisation’s core scientific work and ensure the quality and consistency of its norms and standards.

She was previously Deputy Director-General for Programmes (DDP). A paediatrician from India and a globally recognized researcher on tuberculosis and HIV, she brings with her 30 years of experience in clinical care and research and has worked throughout her career to translate research into impactful programmes. Most recently, Dr Swaminathan was Secretary of the Department of Health Research and Director General of the Indian Council of Medical Research. From 2009 to 2011, she also served as Coordinator of the UNICEF/UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases (TDR) in Geneva.

She has sat on several WHO and global advisory bodies and committees, including the WHO Expert Panel to Review Global Strategy and Plan of Action on Public Health, Innovation and Intellectual Property, the Strategic and Technical Advisory Group of the Global TB Department at WHO, and as Co-Chair of the Lancet Commission on TB. She received her academic training in India, the United Kingdom of Great Britain and Northern Ireland, and the United States of America, and has published more than 250 peer-reviewed publications and book chapters.

Dr Ratna Devi, IAPO Chair (Discussant)

Dr. Ratna Devi is the CEO and Co-founder of DakshamA Health and Education, an organisation that is dedicated to working for access to health, patient education and advocacy. DakshamA aims to create a network of caregivers and patient groups, and work with them on knowledge sharing as well as providing essential feedback for managing long term and chronic diseases. She leads a cross disease Patient Alliance in India called Indian Alliance of Patient Groups (IAPG), Board member HIA (Healthy India Alliance – the National NCD Alliance in India) and I – ORD (Indian Organisation for Rare Diseases). She holds an MBBS degree from Sambalpur University and a dual MBA from SYMBIOSIS and Manipal Institute of Distance Education. Dr. Devi also holds advisory positions at several NGOs and has contributed to research as well as publications.

 10:00 BST

COVID-19 Vaccine Development for Future and Current Pandemics and Public and Patient Engagement in Clinical Trials

There is a pressing need for information on the COVID-19 vaccine development. We have several candidate vaccines using various technological platforms from RNA/DNA through to peptide-based/recombinant protein and traditional live attenuated and inactivated virus approaches. Phase III trials are soon coming to an end. In this session, we will hear a report of the candidate vaccines clearly highlighting where we are, what is in the pipeline and how we will make these vaccines accessible for all from a selected International Federation of Pharmaceutical Manufacturers & Associations partner.

Having an effective vaccine is not the end. Vaccines tested on healthy individuals need further efficacy and safety evaluation amongst vulnerable groups. This session will further look at the need to motivate patients to participate in the clinical trials and the roll out of universal/selective vaccination programmes. How can industry partner with patients and patient organisations to speed up the process?

Karen Alparce-Villanueva, IAPO Secretary and Congress Committee Chair (Moderator)

Karen Alparce-Villanueva is currently a Board Member and Secretary of the International Alliance of Patient Organizations (IAPO) as well as Board Member and Treasurer of the Philippine Alliance of Patient Organizations (PAPO). She has over 30 years experience in the private sector specializing in communications & policy work, 20 of which were spent in the healthcare industry. Karen left her corporate job in 2015 to devote her long experience in health advocacy to advancing patient rights. Karen also served in government as Board Member of the Philippine Health Insurance Corporation (Philhealth) and as consultant for the Health Promotions and Communication Services of the Department of Health (DOH). She was previously External Affairs Director of MSD and was also Corporate Affairs Director of Pfizer Philippines. Karen also runs a communications consulting firm called Health PRx Communications Inc.

Thomas B. Cueni, Director General, International Federation of Pharmaceutical Manufacturers & Associations

Thomas B. Cueni is Director General of International Federation of Pharmaceutical Manufacturers (IFPMA), the global association of research-based pharmaceutical companies and associations. Based in Geneva, IFPMA has official relations with the United Nations and contributes industry expertise to help the global health community find solutions that improve global health. Mr. Cueni is Secretary of the Biopharmaceutical CEO Roundtable (BCR), a policy forum of the global CEOs of IFPMA member companies. He is also Chair of the Business at OECD Health Committee, and also serves on the Board of Directors of the City Cancer Challenge (CCan), an initiative aiming to improve cancer care in major cities in low- and middle-income countries. In addition, Mr. Cueni serves as Industry Co-Chair of the APEC Biopharmaceutical Working Group on Ethics and Chair of the Board of the cross-sectoral AMR Industry Alliance, a group comprising more than 100 companies and associations representing Rx pharma, generics, biotech, and diagnostics committed to tackling the threat of antimicrobial resistance.

Dr Jerald C. Sadoff, MD, Senior Advisor of Clinical Vaccine Development, Janssen Infectious Diseases and Vaccines

Dr. Jerald C. Sadoff is the Senior Advisor, Clinical Vaccine Development, Janssen Infectious Diseases and Vaccines where he helps supervise the clinical development of vaccines against CoVid-19, RSV, Universal Influenza, HPV, HIV and Ebola. He is currently the Medical lead for the Janssen COVID-19 Phase 1, Phase 2 and Phase 3 clinical trials sponsored by the Office of Warp Speed. He has spent his entire career developing vaccines against many bacterial, viral and parasitic diseases, 13 of which have been approved for human use with several others currently in Phase I, IIB and Phase III clinical studies. He is currently on the NIAID AIDS Vaccine Research Working Group where he has been a member for the past 14 years and has served on numerous other advisory and international committees. Over the last 50 years, he has authored and co-authored over 400 articles, book chapters, abstracts and holds 18 issued patents.

Dr Thomas Breuer, MD, MSc, Chief Medical Officer, GSK Vaccines

Thomas is the Chief Medical Officer of the extended GSK Vaccine's company (post integration of Novartis Vaccines in 2015) as well as accountable for all Global Health activities of the company including COVID-19.

He leads the global Medical Affairs organisation in its newly created vertically integrated configuration (global, regional, local), Medical Governance & Compliance, Safety & Pharmacovigilance and patient access functions such as Health Economics & Epidemiology globally or in the regions.

Passionate advocate for improving life of individuals of all ages, as well as overall public health, by turning vaccines into vaccination.

With a career spanning both the public and private sector, Thomas flexes science and a focus on the patient into a business context (and vice versa), synthesizing my public health experience into know-how for developing and commercializing vaccines.

Julia Spencer, Associate Vice President of Global Vaccines Public Policy, Partnerships and Government Affairs, MSD

Julia Spencer serves as the Associate Vice President, Global Vaccines Public Policy, Partnerships, and Government Affairs at Merck. In this role, she leads global public policy, partnership, and advocacy efforts to expand and sustain access to Merck vaccines and to strengthen the immunization systems delivering our products. Julia also currently serves as the Chair of the International Federation of Pharmaceutical Manufacturers and Associations’ (IFPMA) Vaccine Committee.

Julia brings to this role more than 25 years of public health and health policy experience at the local, state, national, and international levels. Julia joined Merck in 2014 as the lead for International Vaccines Public Policy. In this role, she oversaw the formation of a dedicated, internationally-focused policy team charged with strengthening partnerships and developing new platforms for evidence-based policy engagement on critical vaccines issues.

Prior to joining Merck, Julia served for 15 years as a senior health official in the US Department of Health and Human Services (HHS). Her tenure at HHS included service as the Science Policy Director within the HHS Secretary’s policy, planning, and evaluation office (ASPE). She was responsible for policy coordination, planning, and legislative development focused on the HHS science agencies – Centers for Disease Control and Prevention, Food & Drug Administration, National Institutes of Health, and Office of the Assistant Secretary for Preparedness and Response.

During the decade she worked in ASPE, she led the creation of two 5-year HHS Strategic Plans, the first HHS Global Health Strategy and the Health System Measurement Project; developed a new HHS-wide evaluation capacity development initiative; and served as a senior policy analyst in the US CDC Rwanda Office.

Prior to joining ASPE, she spent six years working on tobacco policy and substance abuse prevention efforts with HHS’s Substance Abuse and Mental Health Services Administration. Julia holds a Doctor of Philosophy degree in public health, Master of Science in public health, and Bachelor’s degrees in psychology and health education.

Steve Lockhart, Vice President, Head of Europe and Asia-Pacific, Vaccine Clinical Research and Development, Pfizer

Biotechnology R&D Director. Experienced in both strategic and operational aspects of biopharmaceutical product development through registration and launch. Innovative approaches to development and registration routes. Successfully built and led teams, with both line and matrix management experience. Medically qualified, with over 30 years in the pharmaceutical industry, following 6 years in hospital medicine. Recognised leader in vaccine development. Experience spans support for Europe, North America, China, Japan, Australia, South Africa, Singapore and other markets around the world, including both developed world and global health products. Worked in large pharma, small to mid-size biotech and start-up joint ventures. Led strong collaborations with academic and non-profit groups. Member of Medical Research Council infection and Immunity Board (MRC IIB).

 11:00 BST

Mobility Break 

 11:10 BST

Mental Health, the Forgotten Pandemic - during and after COVID-19

Mental health is a silent pandemic, often missed during a routine check-up. While the focus on NCDs has brought mental health and the consequences of neglect into limelight, the conditions are difficult to diagnose, even more difficult to measure and understand progress, and have very little investment.

Before COVID-19, many patients could not access safe, quality, and acceptable mental health services. The lockdowns have exasperated this situation. The fear of job losses, lack of social support, stigmatisation and domestic violence have impacted upon mental health of many communities. Many mental health conditions will manifest much later.

This session will explore general and specific mental health issues, especially within minority ethnic groups and other socially exclude groups. The global mental health picture, what has changed and why due to the pandemic. What can industry do to enhance capacities and build trust and confidence amongst patient organisations? What can industry offer as a partnership model to governments to deal with mental health issues as a whole in the future?

Is there enough research for mental health conditions especially in health emergencies? Are governments prepared to handle mental health during pandemics? What could be some simple steps and measures to follow?What happens to vulnerable populations during health emergencies like COVID-19? What can communities and caregivers do to manage during such conditions (like lockdown)? What role do organisations like Alzheimer’s Disease International have to advocate for better policies?

Bisi Bright, FPCPharm, FPSN, MPH, MNIM, 1st Vice Chairman, CEO and Founder, LiveWell Initiative LWI (Moderator)

Bisi Bright is a Pharmacist, Lecturer and Public Health Manager. She is 1st Vice Chairman, CEO and Founder of LiveWell Initiative LWI, a self-sustaining nonprofit. She is an Internship Preceptor at Harvard T H Chan School of Public Health, Boston USA and, a Doctoral Thesis Co-Supervisor at the University of Helsinki in Finland, with publications in internationally recognised peer reviewed journals. She served as IAPO Regional Steering Committee Member for Africa from 2011-2013; and delivered a paper at the inaugural Africa Regional IAPO Meeting in Johnnesburg, in 2013. She led LWI to win the first-ever IAPO Global Photocontest at PSD 2013 with a photo titled TRIPLETS. At the global level, Bisi Bright served on the FIP as HMiS Africa/Middle East Rep and served on 3 International Working Groups including Patients as Partners Working Group, an IAPO-Partnered Project.. Bisi founded another PatientsOrganisation, Women in Hepatitis Africa WIHA in 2017, and doubles as Deputy National Coordinator of the Hepatitis national chapter in Nigeria, Exco of the Healthcare Federation of Nigeria HFN. Her latest work is in relation to COVID-19 Study Protocols and Prophylaxis Clinical Trials Research and Covid Resilience for greater impact. Bisi Bright is happily married and well travelled.

Dr Kannan Subramaniam, Medical Lead for NCD Strategy - Emerging Markets, Pfizer Upjohn

Kannan Subramaniam leads the non-communicable disease (NCD) strategy for Research, Development & Medical at Upjohn in the Emerging Markets. He is a physician with specialist training in psychiatry and has over a decade of clinical experience across emerging and developed nations. Prior to joining Pfizer in 2010, Kannan served on governance boards of health care, biotechnology and health information technology organizations fostering the growth of innovative companies that aim to improve health outcomes. Kannan’s focus now is to first understand and then, bridge knowledge and practice gaps through scientific transformation of NCD care, while maintaining and fostering patient centricity.

Prof Kamaldeep Bhui, CBE, Professor of Psychiatry, University of Oxford & Editor in Chief, British Journal of Psychiatry Oxford University

Professor Bhui is editor of British Journal of Psychiatry, and College Editor chairing the publications management board of the Royal College of Psychiatrists.

He is Director of the Synergi Collaborative Centre on ethnic inequalities, severe mental illness and multiple disadvantage; Director of the Cultural Consultation Service at QMUL and Director of MSc Creative Arts & Mental Health.

He is a member of the Deanery of the School of Medicine and Dentistry; Deputy Lead of the Mental Health Theme of the North Thames CLAHRC/ARC; Member of the QMUL Arts and Cultural Strategy Committee, He is former Public Health Lead at the Royal College of Psychiatrists (2012-2015) and now Chairs PHE’s Advisory Committee on Mental Health Campaigns. He is a member of the advisory group of the Mental Health Policy Research Unit at UCL and KCL.

He is also the co-founder of Careif (www.careif.org), an international mental health charity that promotes work for young people and their health through culture, sport and arts. He was a founding member of the World Association of Cultural Psychiatry and President of WACP 2012-2015, when QMUL hosted the World Congress of Cultural Psychiatry He qualified in Medicine at the United Medical Schools of Guy's & St Thomas in 1988, and subsequently worked at the Maudsley, Institute of Psychiatry, Guy's, King's, St Thomas' Hospitals and Medical Schools being appointed to his first consultant clinical academic post as a senior lecturer in 2000. He was appointed Professor in 2003 at QMUL. Previously he was a Wellcome Training Fellow in Health Services Research and Senior Medical Officer in the policy research programme at Department of Health.

Annie Bliss, Communications and Policy Manager, Alzheimer's Disease International

Annie is Communications and Policy Manager at Alzheimer’s Disease International (ADI). Annie manages ADI's communications portfolio, the World Alzheimer’s Month campaign, and ADI's policy engagement, including with the World Health Organisation.

Annie holds an LLB (Hons) in Law from the University of Warwick and a Master of Science in Health and International Development from the London School of Economics and Political Science (LSE). Before joining ADI, she worked for various NGOs in the field of public health and mental health in the UK, South Asia and sub-Saharan Africa

 11:55 BST

Prioritizing NCDs in Future Pandemic Preparedness - Addressing Concomitant Risks of the Virus and the Underlying NCDs

Patients with non-communicable diseases (NCDs) faced four major challenges during COVID-19 pandemic. First there was high morbidity and mortality within NCD patients globally. Second, the infodemic and conflicting messages from governments created fear within the NCD patients resulting in them not self-referring or visiting their secondary prevention regular clinics. Third, health systems were disrupted and the full range of current preventative, curative, rehabilitative and palliative treatments were disrupted. Disruption of supply chains created access challenges. Lastly, patient support groups and organizations were shut down. They could not support the patients. This all has a long-term impact.

This session will explore this context and discuss the necessary steps to mitigate the negative impact of the pandemic on patients with NCDs in future pandemics and other health emergencies. Setting the global context of COVID-19 and its effect on NCDs, both immediate, short term and long term – for example lasting cardiovascular and neurological effects.

How has COVID-19 affected the diabetic populations, especially those that are insulin dependent? How has it affected caregivers and families? What can be done by communities, patient organizations, patients themselves, caregivers and governments to be prepared for such pandemics in the future?

What are some of the simple solutions for making access a reality in difficult situations like the pandemic? Are there best practices that patient groups can follow to reach out to their members and make services available?

How have hospitals and medical institutions coped with the lockdown situation? What can healthcare providers and institutions do to manage NCD patients in the future? Is there scope for more research into pandemics and NCDs and how can we make this happen?

Dr Amrit Ray, MD, MBA, Global President of R&D and Medical, Pfizer Upjohn (Moderator)

Dr. Amrit Ray is a physician researcher and corporate executive committed to advancing scientific breakthroughs and championing patient-focused, ethical healthcare practices. Dr. Ray is Global President of R&D and Medical at Pfizer Upjohn. His instrumental role in developing, launching, and catalyzing access and impact for medicines combatting debilitating diseases has been recognized by patients and governments. Dr. Ray was previously Chief Medical Officer for pharmaceuticals at Johnson & Johnson and a hospital doctor in Britain’s National Health Service. He publishes widely on how medical innovation can positively impact patients and society.

Dr Mark Barone, Vice-President, International Diabetes Federation

Dr. Mark Barone (Brazil) is Vice-President of the International Diabetes Federation (2020-21). He has previously served on the Organising Committee of the IDF Young Leaders in Diabetes Programme (2011-2015).

Diagnosed with type 1 diabetes at the age of 10, Dr. Barone became actively involved as a youth volunteer for ADJ Diabetes Brasil, coordinating diabetes camps and monthly support groups for young adults with diabetes. He was subsequently invited to attend and collaborate with diabetes camps throughout the IDF South and Central America Region, including in Argentina, Chile, Paraguay and Uruguay. This led him to become a member of the Organising Committee of the Diabetes Education and Camping Association (DECA).

Over the last 15 years, Dr. Barone has initiated, coordinated and supervised partnership building initiatives, public health and leadership building programmes. In 2016, he started collaborating with the Public Health Institute (PHI) as Technical Director for Brazil. There, he developed sustainability and scalability plans for global public health programmes and oversaw initiatives funded by partner institutions, including HealthRise Brazil and HeartRescue Brazil. He also founded the Intersectoral Forum to Fight NCDs (ForumDCNTs) in Brazil, which aims to develop and implement cost-effective and sustainable solutions to tackle diabetes and other NCDs in the country.

James Headen Pfitzer, Director, Access Accelerated

As the Director of Access Accelerated he leads on the overall strategy and implementation for this multi-year initiative. Prior to joining Access Accelerated, James spent 10 years at the World Health Organization Headquarters in Geneva, Switzerland, where he handled strategy, engagement and policy for the Assistant Director Generals of Health Systems and Innovation and Global Health Security. Issues covered by James included AMR, pandemic preparedness, IHR, R&D, innovation, universal health coverage, health systems strengthening, intergovernmental negotiations and consensus building. James also worked to implement capacity building activities at country and community levels and was appointed by the WHO Director General as the health advisor in the UN Secretary General’s Office in New York for the Post-2015 Development Agenda and adoption of the SDGs.

Dr J S Thakur, MD, President, World NCD Federation

Dr J S Thakur

World NCD Federation (TBC)

 12:40 BST

Genetic Disorders and Rare Diseases Patient Co-Creation

Rare Disease International has mapped the main issues affecting patients with genetic and rare diseases in their declarations and statements to the World Health Organization/United Nations. There is an acute shortage of accessible and effective diagnostic services. We do not have quality and effective genetic counselling services to support patients and carers. There are many undiagnosed genetic and rare diseases, and syndromes without a name.

While there are major innovative treatments and cures developed or in the pipeline, many patients cannot access these gene therapies, biologic monoclonal antibody, and other new small molecule therapies. During the pandemic, these patients suffered even more.

The session will look at patient co-creation within gene and cell therapies research and development, and advocacy, using Skin Disorders as a unique case to highlight the issues.

Nidhi Swarup, Founder and President, Crohn’s & Colitis Society of Singapore (Moderator)

Nidhi Swarup is the Founder and President of the Crohn’s & Colitis Society of Singapore (CCSS) since 2012. Nidhi is an active member of the SingHealth Patient Advocacy Network (SPAN). She also serves on the Management Committee member of Shree Lakshminarayan Temple. Nidhi has two Masters Degrees; one in Operations Research from University of Delhi, India and the other in Finance from Leicester University, UK. She also has a Graduate Certificate in Professional Counselling from the Swinburne University of Technology, Australia. As the President of the Rotary Club of Raffles City she organized a workshop where Chromoendoscopy experts from USA trained 100 Gastroenterologists. Nidhi has facilitated the formation of IBD Patient Support Groups in Thailand, Malaysia and Philippines. She has made presentations at the Asia Pacific IBD Alliance, APARDO, EFCCA and AOCC.

Julie Breneiser, Executive Director, Gorlin Syndrome Alliance

Julie Breneiser is the Executive Director of the Gorlin Syndrome Alliance. Previously, she was on their Board of Directors.

In the past, she worked as a Physician Assistant. Until 2007, Julie was not a “support group kind of person”. As her affected children developed manifestations, she contacted the Basal Cell Nevus Syndrome Life Support Network (now the GSA) to learn if the signs were part of the syndrome. The rest is history!

It is Julie’s feeling that there is nothing better than this work with its purpose, improving the quality and quantity of the lives of people with Gorlin syndrome.

Camilla Krogh Lauritzen, Chief Patient Officer and Head of Patient Engagement, LEO Pharma

Anchored in the Research organization at LEO Pharma, my team and I are responsible for driving key deliveries to LEO´s 2025 strategy that targets development of intervention against some of this World’s most painful and life-threatening genetic and autoimmune diseases for which no treatment or cure currently exist.

To that end, I have established the Patient Engagement function at LEO, implying a responsibility for the strategic and operational patient engagement activities. This is to ensure that all key decisions are informed by patient KOLs and communities, as well as executed in partnership with the mentioned.

Prior to joining LEO in May 2018, I established and led the Patient Engagement function at Abbott, AbbVie and Novo Nordisk. Prior to joining pharma, I worked for science/patient alliances and for patient organizations. In my view and experience, ‘Patients’ are indeed disease experience experts, and at LEO this translates into a ‘Nothing About You Without You’ mantra and commitment that shapes our approach, and we strive daily to develop solution for people affected by rare disease with severe skin manifestations (click here for more information on what our commitment looks like in practical terms).

In terms of academic training, I hold Master degrees in Molecular Biology, Corporate Communication and Business Administration.

Dr Ivana Knezevic, MD, Scientist & Team Leader, World Health Organization

Dr Ivana Knezevic

World Health Organization (TBC)

 13:25 BST

Mobility Break

 13:35 BST

Patient Centricity within Health Technology Assessment, Value Based Healthcare and HTx 

World Health Organization’s Director-General has rightly stated that “health is not a cost; it is an investment. Health is not a reward for development; it is a prerequisite”. This session explores how patient engagement in HTA/VBHC/HTx is super critical for access to innovative and effective healthcare to become a reality.

Incorporating innovative health technologies needs evidenced based decision making. Traditionally, many health systems use health technology assessment as a bridge between healthcare evidence and policy-making. This is considered to lack patient-centricity. We now have alternatives. Value Based Healthcare (VBHC) is the equitable, sustainable, and transparent use of the available resources to achieve better outcomes and experiences for every person. On the other hand, HTx the Next Generation Health Technology Assessment (HTA), a Horizon 2020 European Union Project, aims to bring both HTA and VBHC together to support patient-centred, societally oriented, real-time decision-making on access to and reimbursement for health technologies throughout Europe.

Jan Geissler, Chief Executive Officer, Patvocates (Moderator)

As a CML patient since 2001, Jan co-founded the patient advocacy organisations LeukaNET, European Cancer Patient Coalition, CML Advocates Network, Acute Leukemia Advocates Network and Workgroup of European Cancer Patient Advocacy Networks (WECAN). He was Director of the European Patients’ Academy (EUPATI) and manages the German EUPATI platform. Jan represents patient perspectives in committees e.g. in the EU Cancer Mission Assembly, European Cancer Organisation, EHA, EuroBloodNET, ISPOR, Berlin Institute of Health, iCMLf, German National Decade Against Cancer and the Ethics Committee of the Bavarian Chamber of Physicians. He is CEO of Patvocates, a think tank, consultancy and social enterprise on patient advocacy, health policy and patient engagement in research. He is work package leader in the IMI big data project HARMONY.

David L. Grainger, Head of Global Health Outcomes and Policy, Biointelect

David Grainger

Ann Single, Patient and Citizen Involvement Interest Group Chair and Patient Voice Initiative Coordinator, Health Technology Assessment International

Ann Single is the Coordinator and a Steering Committee Member of the Patient Voice Initiative (Australia) and Chair of the HTAi Patient and Citizen Involvement Interest Group (PCIG). She began in this field directing patient involvement and communication in Scotland’s first Health Technology Assessment (HTA) body. In PCIG she has been involved in the development of numerous tools and resources to support patient involvement in HTA. Her experience includes co-editor of the book Patient Involvement in Health Technology Assessment (2017), lay reviewer for several journals, work in a patient organization, and science and corporate communication for government and research institutions.

Dr Dalia Dawoud, Scientific Adviser, National Institute for Health and Care Excellence 

Dr Dalia Dawoud is Scientific Adviser at the National Institute for Health and Care Excellence (NICE). She holds a PhD in pharmaceutical policy and economics from King’s College London. Her current work is focused on the use of real-world evidence to inform drug development and health care decision making. Key research projects that Dalia works on include the IMI GetReal Initiative and Horizon 2020-funded HTx (Next generation Health Technology Assessment) project. She serves as Associate Editor for ISPOR journal Value in Health and for Elsevier’s journal Research in Social and Administrative Pharmacy. Dalia holds adjunct position as Associate Professor at Faculty of Pharmacy, Cairo University.

 14:20 BST

Personalised Healthcare: can Lessons from COVID-19 Accelerate Adoption?

This session explores how the personalised healthcare (PHC) approach can provide a high-resolution insight into each patient’s disease. By leveraging advances in digital health, imaging, digital pathology, genomics and health informatics (electronic medical records, real world data and patient reported outcomes), PHC provides healthcare that is precise and particular for that patient and right for their stage (timely) of the disease. PHC promises that patient lives will no longer revolve around their healthcare facilities, healthcare team, or disease.

Kawaldip Sehmi, Chief Executive Officer, IAPO (Moderator)

Kawaldip previously held the position of CEO at Richmond Psychosocial Foundation International and worked as Managing Director of Coram Children’s Legal Centre. He has European and international public health experience as Director of the Global Health Inequalities Programme and as Chairman of the European Network of Quitlines. Kawaldip’s qualifications include an MSc in the Public Health International Programme from the London School of Hygiene and Tropical Medicine, an MBA in Business Administration from the London Business School and Open University, and an LLB (Hons) from the London College of Law.

Jan Geissler, Chief Executive Officer, Patvocates

As a CML patient since 2001, Jan co-founded the patient advocacy organisations LeukaNET, European Cancer Patient Coalition, CML Advocates Network, Acute Leukemia Advocates Network and Workgroup of European Cancer Patient Advocacy Networks (WECAN). He was Director of the European Patients’ Academy (EUPATI) and manages the German EUPATI platform. Jan represents patient perspectives in committees e.g. in the EU Cancer Mission Assembly, European Cancer Organisation, EHA, EuroBloodNET, ISPOR, Berlin Institute of Health, iCMLf, German National Decade Against Cancer and the Ethics Committee of the Bavarian Chamber of Physicians. He is CEO of Patvocates, a think tank, consultancy and social enterprise on patient advocacy, health policy and patient engagement in research. He is work package leader in the IMI big data project HARMONY.

André Trottier, Global Head of Personalised Healthcare Policy Strategy, Roche

André is the Global Head of Personalised Healthcare Policy Strategy at Roche. He leads a team that engages in developing new policy options as the convergence of medical knowledge, technology and data science is revolutionising patient care

André has led teams in government (Health Canada and the British Columbia Health Services Authority), the non-for-profit sector (Heart and Stroke Foundation) and the private sector (GlaxoSmithKline Canada and Roche Canada). He has held health policy positions in the therapeutic areas of neuroscience, oncology, and infectious diseases (anti-microbial resistance).

He holds a Master’s degree in public administration from the University of Ottawa, Canada. He is the recipient of the Queen Elizabeth II Golden Jubilee Award for his volunteer services with the Lifesaving Society.

André is married and is the proud father of three daughters.

 15:00 BST

Mobility Break 

 15:10 BST

Launch of MAPS - Mapping the Patient Journey for NCDs

Dr Ratna Devi, IAPO Chair

Dr. Ratna Devi is the CEO and Co-founder of DakshamA Health and Education, an organisation that is dedicated to working for access to health, patient education and advocacy. DakshamA aims to create a network of caregivers and patient groups, and work with them on knowledge sharing as well as providing essential feedback for managing long term and chronic diseases. She leads a cross disease Patient Alliance in India called Indian Alliance of Patient Groups (IAPG), Board member HIA (Healthy India Alliance – the National NCD Alliance in India) and I – ORD (Indian Organisation for Rare Diseases). She holds an MBBS degree from Sambalpur University and a dual MBA from SYMBIOSIS and Manipal Institute of Distance Education. Dr. Devi also holds advisory positions at several NGOs and has contributed to research as well as publications.

Menassie M. Taddese, President for Emerging Markets, Upjohn Pfizer

Menassie M. Taddese is an accomplished bio-pharmaceutical executive leader with extensive experience and success in the health industry. He leads with a focus on unlocking value and boosting performance at all levels, organizational effectiveness, impactful decision making and culture which has enabled him to grow and transform businesses of all sizes.

Menassie is currently the President for Emerging Markets Upjohn – A Pfizer Division and is a member of Upjohn’s Executive Leadership Team. In his current role, he has the privilege of leading an organization of approximately 2,000 colleagues across ASEAN, Africa, the Middle East and Latin America in the fight against non-communicable diseases (NCDs). Menassie believes in the power of partnerships to address the NCD burden and is focused on leading the conversation with multiple partners to shape policies and improve NCD care.

He has over 23 years in the pharmaceutical industry with vast experience and increasing scope covering general management, finance, treasury and commercial in multiple geographies across all continents. The breadth and depth of his experience includes country, regional and global roles in the United States, Europe, International Developed Markets and Emerging Markets.

Menassie is a committed and inspiring leader for Pfizer and Upjohn colleagues and a mentor to many promising professionals. He is passionate about improving healthcare inequalities and ensuring that people from every country, community and socio-economic background have access to quality and affordable care.

This commitment towards equity has been a lifelong passion of his both professionally and personally. He has served as the Chair of Pfizer’s Global Blacks Council and as a member of Pfizer’s Diversity Worldwide Leadership Committee. He continues to sponsor numerous related initiatives in efforts to advance Pfizer’s diversity and inclusion objectives.

Menassie holds a bachelor's degree in Economics and Accounting from Virginia Tech and a Finance MBA from Penn State’s Smeal College of Business, where he graduated with distinction. Menassie lives in Dubai with his wife and three kids.

Dr Amrit Ray, MD, MBA, Global President of R&D and Medical, Upjohn Pfizer

Dr. Amrit Ray is a physician researcher and corporate executive committed to advancing scientific breakthroughs and championing patient-focused, ethical healthcare practices. Dr. Ray is Global President of R&D and Medical at Pfizer Upjohn. His instrumental role in developing, launching, and catalyzing access and impact for medicines combatting debilitating diseases has been recognized by patients and governments. Dr. Ray was previously Chief Medical Officer for pharmaceuticals at Johnson & Johnson and a hospital doctor in Britain’s National Health Service. He publishes widely on how medical innovation can positively impact patients and society.

 15:25 BST

Digital Healthcare: Defragmentation and Integration of Health Systems and Care Pathways

Fragmented healthcare systems are not patient centric and deliver extremely poor health outcomes for patients. Patient experience of navigating fragmented healthcare systems does not inspire trust in the health system as safety and quality is always at risk of being compromised through disjointed services.

Can digital healthcare integrate our health systems and change the care pathways? Can it make our health systems more safe, patient-centred, effective, and efficient? Can it advance the World Health Organization’s Framework on integrated people-centred health services that has encouraged patient engagement and co-creation and puts the comprehensive needs of people and communities, not only diseases, at the centre of health systems, and empowering people to have a more active role in their own health? This session will explore how this Framework encourages changing the delivery paradigm.

Kawaldip Sehmi, Chief Executive Officer, IAPO (Moderator)

Kawaldip previously held the position of CEO at Richmond Psychosocial Foundation International and worked as Managing Director of Coram Children’s Legal Centre. He has European and international public health experience as Director of the Global Health Inequalities Programme and as Chairman of the European Network of Quitlines. Kawaldip’s qualifications include an MSc in the Public Health International Programme from the London School of Hygiene and Tropical Medicine, an MBA in Business Administration from the London Business School and Open University, and an LLB (Hons) from the London College of Law.

Eric de Roodenbeke, Chief Executive Officer, International Hospitals Federation

Dr. de Roodenbeke assumed the position of Chief Executive Officer of the International Hospital Federation in June 2008. Between July 2007 and May 2008 he was Senior Health Specialist at the World Health Organization (WHO) for the Global Health Workforce Alliance (GHWA) during which time he was involved in support country action programs to develop a response to the HRH crisis; development of strategies for regional networks in support of HRH development and was the focal point for follow-up actions in Francophone countries.

He was Senior Health Specialist at the World Bank (AFTH2 & WBI) from 2004 to 2006 in which time he was Team leader (TL) for various health intervention, educational, management and capacity building programs mostly in Africa. He was Director of the 700-bed University Hospital of Tours, and Senior Officer responsible for hospital and health financing interventions at the French Ministry of Foreign Affairs from 2001 to 2003 and 1999 to 2001, respectively. Between 1996 and 1998, he was Senior Officer on hospital policy expertise at the French Ministry of Cooperation. From 1994 to 1996, he was Deputy Director of the 870-bed University Hospital of NANTES.

Dr. de Roodenbeke has published widely on hospital organization, health systems reforms human resources and health facility management, health policy, insurance and financing in developed and developing countries.

Siva Singh, Director EMEA, Escalla

Siva has worked in the healthcare sector for over 25 years and has a wealth of knowledge from a UK perspective and internationally. He worked directly with foreign Government agencies, the Department of International Trade and also in collaboration with global consultancies this was to develop truly bespoke role specific learning programmes in support of change and transformation.

The programmes incorporated leadership and cultural changes aside learning interventions to change behaviours and embed change.

Led on the Sepsis recognition and treatment programme in the Kingdom of Saudi Arabia. This won the Global Sepsis award in 2018 and is forecast to save 32,000 lives annually.

Led on various projects in Egypt to develop bespoke solutions for family physicians, nursing teams and other healthcare engagements. Leadership and management learning models in Egypt and Saudi Arabia.

Siva has also delivered guest lectures on healthcare leadership and patient safety in the UK and overseas, including Saudi Arabia, Egypt.

Dr Vijay Rawal, MD, Deputy Medical Director Commissioning, NHS England and NHS Improvement (Midlands) & Subject Matter Expert in Primary Care, Escalla 

Dr Vijay Rawal is a practicing General Practitioner in the UK, Deputy Medical Director Commissioning for NHS England and NHS Improvement (Midlands), Subject Matter Expert in Primary Care for Escalla, a GP Appraiser, a trained Mentor in Healthcare Organisations, a Specialist GP Advisor for the Care Quality Commission and Director of Rawal Consultancy Limited. His past experiences include being a GP principal, Medical Director of a Primary Care Federation and Provider Company, Clinical Lead for NHS England and Local Medical Committee Medical Secretary/Director. His areas of interest are System Integration, Digitalisation, Clinical Governance, Education, Quality and Efficiency.

 16:10 BST

Blood Disorders and Access to Healthcare Services and Therapies (Carol Ossai Talk)

Sickle cell disease (SCD) also known as sickle cell anaemia, is the most common genetic disease in the world. It is caused by an abnormal form of haemoglobin. The inadequate care and treatment of children affected by SCD in low- and middle-income countries results in many new-borns dying before the age of five years old while others live shortened lives marked by significant morbidity.

This session explores health inequality and the opportunity to deliver better healthcare, especially around sickle cell crisis (a painful event), and access to new biologic therapies and future gene therapies.

Dr Androulla Eleftheriou, Executive Director, Thalassemia International Federation (Moderator)

Dr Androulla Eleftheriou obtained her graduate and postgraduate degrees in Biochemistry, Microbiology, Virology, and Business Administration from the University of London and the University of Leicester, UK, receiving fellowships from the World Health Organization and the Fulbright Commission. Her postdoctoral studies were completed at the Centre for Disease Control in Atlanta, GA, USA. From 1990 until August 2006, she was Head of the Virus Reference Centre of the Cyprus Ministry of Health. Since 2006 she serves as the Executive Director of the Thalassaemia International Federation, after 13 years of being a volunteer and Scientific Coordinator of the Federation’s renowned educational programme. Dr Eleftheriou is an expert patient advocate, having attended seminars on Patient Advocacy offered by the Harvard University in Boston, MA, USA. She served as Member of the Board of Directors of IAPO, EPHA, President of the Cyprus Alliance for Rare Disorders and participated in several committees and bodies (EUCERD, ESTM, SITA) as both a scientist and patient advocate.

Alexey Salamakha, Director of Global Patient Relations, Novartis Oncology

Alexey Salamakha

Director, Global Patient Relations at Novartis Oncology

Issa Ali, Chair, Global Alliance of Sickle Cell Disease Organizations

Issa Ibn Abrahim Ali hails from the Caribbean, the Twin Island Republic of Trinidad and Tobago. He started his professional career as a licensed/registered pharmacist in the public health sector and later moved to being CEO (Pharmacy Manager) in the private sector. This International Master of Business Administration (Health Management) holder has been the President of the Society for Inherited and Severe Blood Disorders Trinidad and Tobago Ltd.) (SISBDTT) (Hemophilia; Thalassemia and Sickle Cell Disease) for the past eight years. Championing and advocating for persons living with inherited and severe blood disorders inclusive of Sickle Cell Disease, has become his life cause.

In his capacity as President, he has represented SISBDTT at several International Conferences, namely hosted by internationally recognized organizations like the World Federation of Hemophilia (WFH) and the Thalassemia International Federation (TIF).

 16:45 BST

Day 1 Wrap Up

Ellos Ellard Lodzeni, Board Treasurer, IAPO

Ellos is a health rights, social justice and governance advocate as well as a patient for patient safety champion with an enormous passion on health matters. He is the patron and founder trustee of Patient and Community Welfare Foundation of Malawi, the only cross-disease patient movement in Malawi which articulates and amplifies the patient voice and drives the crusade for patient-centered health care in Malawi.



DAY 2 – 17 September 2020

 9:00 BST

Introduction Day 2

IAPO will hold Day 2 of the GPC 2020 to mark the World Patient Safety Day (WPSD) on 17th September 2020. We will reinforce the WPSD 2020 theme that without health worker safety, there can be no patient safety.The COVID-19 pandemic has shone the spotlight on the weaknesses of our health systems, undermining patient and health professional safety. The lessons we learned can be useful not only for better preparedness, but also for reducing the avoidable harm, morbidity and mortality.

The day will examine the call to action for ensuring safety across different dimensions of healthcare and from diverse stakeholders’ perspectives. Our distinguished speakers coming from various backgrounds will provide insight into the available policies and instruments, offer their valued experiences and share their innovative ideas on how to promote safety culture and wove patient safety into every health system’s fabric.

Dr Neda Milevska-Kostova, IAPO Vice Chair

Dr Neda Milevska-Kostova is president of Studiorum, a regional think-tank working on research and policy aspects of health and wellbeing in Europe. Neda has over 20 years experience in health research, policy and patient advocacy. She holds a MSc in functional pharmaceutics (University of Tokyo), MA in public policy (University of Pittsburgh, USA), and a PhD in public health (University of Sheffield, UK).

Neda is also a Vice-president of Health First Europe, an umbrella organization based in Belgium working on improving access to innovative health technologies in Europe. In 2018, she was awarded the title Primarius by the Minister of Health for exceptional and long-term commitment to the advancement of health system and population health in Macedonia.

 9:15 BST

2nd World Patient Safety Day and WHO Decade of Patient Safety 2020-2030

Patient harm has attained global public health concern in our health systems. We must in national unity and global solidarity implement the World Health Assembly 72.6 Resolution and the World Health Organization (WHO)’s flagship initiative "A Decade of Patient Safety 2020-2030" launched in February 2020 to advance the global patient safety movement.

WHO’s initiative cuts across all health system structures. It demands a whole-of-government, whole-of-society and whole-of- the-patient community to address patient safety in the whole health system. This session will explore concrete next steps for the implementation of the initiative.

Rt Hon Jeremy Hunt MP, Chair, House of Commons Health and Social Care Select Committee

Jeremy Hunt has been a Conservative Member of Parliament for South West Surrey since May 2005.

In May 2010 Jeremy was appointed Secretary of State for Culture, Olympics, Media and Sport, during which time he oversaw a successful Olympic and Paralympic Games in London in the summer of 2012. From September 2012 to July 2018, Jeremy held the position of Secretary of State for Health. In June 2018, Jeremy became the longest serving Secretary of State for Health in British history. In July 2018, Jeremy was appointed Secretary of State for Foreign and Commonwealth Affairs, a position he held until July 2019. He was elected Chair of the House of Commons Health and Social Care Select Committee in January 2020.

Born on 1 November 1966, Mr. Hunt studied Philosophy, Politics and Economics at Oxford University. He lives in Godalming and London with his wife Lucia and their three young children.

 9:30 BST

2019 Jeddah Ministerial Declaration on Patient Safety

This session will provide an overview of the commitments and advances from the 2019 Jeddah Declaration proclaimed at the 4th Global Ministerial Summit on Patient Safety.

It is an articulation of allegiance to ensuring continuity of action, which was to follow through the postponed 5th Global Ministerial Summit on Patient Safety in 2020 in Switzerland under the slogan “Less Harm Better Care – from Resolution to Implementation&rdquo.

Dr Abdulelah AlHawsawi, MD, Director-General, Saudi Patient Safety Centre

Dr. Abdulelah Alhawsawi is the founding Director-General of the Saudi Patient Safety Center (SPSC), and MOH Advisor on Patient Safety. He led the efforts to establish SPSC as a WHO Collaborating Center for patient safety policies and strategies (1 of only 5 WHOcc worldwide in this field). He holds Dual Certified Boards (American - Canadian) of general surgery with sub-specialty in Transplant and Hepatobiliary Surgery.

He is a consultant to several national and international quality and safety organizations and recently became an executive committee member of the Global Sepsis Alliance (GSA). He was part of the Expert Panel on the 3rd Global Patient Safety Challenge of the WHO. He chaired the Organizing Committee for the 4th Global Ministerial Summit on Patient Safety in Jeddah, Saudi Arabia, in 2019. Dr. Alhawsawi has helped introduce Patient Safety as a G20 priority in the 2020 G20 of Saudi Arabia. Currently, Dr. Alhawsawi is part of the WHO’s Global Patient Safety Action Plan Taskforce.

 9:45 BST

AMR: Preventing the Next Pandemic and the AMR Action Fund

This session will be two-fold. The first part will highlight the history of antimicrobial resistance (AMR) within our health systems and the vision to have an AMR global fund to address this. AMR possesses serious threats to patient safety and will become the next global health pandemic if not controlled now. Our world faces a silent, slow-moving global threat that kills around 700,000 people each year due to the uncontrolled rise of superbugs resistant to antibiotics. These superbugs can affect anyone, of any age, in any country. AMR is a universal issue that impacts us all – we are all at risk. This looming global crisis has the potential to be as large or even larger than COVID-19 in terms of deaths and economic costs.

The second part will then share the realisation of this vision in the International Federation of Pharmaceutical Manufacturers & Associations-led USD $ 1 billion AMR Action Fund that aims to bring 2 to 4 new antibiotics to patients by 2030. The Action Fund will work with partners to create market conditions that enable sustainable investment in the antibiotic pipeline.

Dame Sally Davies, GCB, DBE, FRS, FMedSci, UK Government’s Special Envoy on Antimicrobial Resistance, UK Department of Health and Social Care

Dame Sally Davies was appointed as the UK Government’s Special Envoy on AMR in 2019. She is also the 40th Master of Trinity College, Cambridge University. Dame Sally was the Chief Medical Officer for England and Senior Medical Advisor to the UK Government from 2011-2019. She has become a leading figure in global health including serving as a member of the World Health Organisation (WH O) Executive Board 2014-2016 and as co-convener of the United Nations Inter-Agency Co-ordination Group (IACG) on Antimicrobial Resistance (AMR) reporting in 2019.

In the 2020 New Year Honours, Dame Sally became the second woman (and the first outside the Royal family) to be appointed Dame Grand Cross of the Order of the Bath (GCB) for services to public health and research, having received her DBE in 2009

Thomas Cueni, Director General, International Federation of Pharmaceutical Manufacturers & Associations

Thomas B. Cueni is Director General of International Federation of Pharmaceutical Manufacturers (IFPMA), the global association of research-based pharmaceutical companies and associations. Based in Geneva, IFPMA has official relations with the United Nations and contributes industry expertise to help the global health community find solutions that improve global health. Mr. Cueni is Secretary of the Biopharmaceutical CEO Roundtable (BCR), a policy forum of the global CEOs of IFPMA member companies. He is also Chair of the Business at OECD Health Committee, and also serves on the Board of Directors of the City Cancer Challenge (CCan), an initiative aiming to improve cancer care in major cities in low- and middle-income countries. In addition, Mr. Cueni serves as Industry Co-Chair of the APEC Biopharmaceutical Working Group on Ethics and Chair of the Board of the cross-sectoral AMR Industry Alliance, a group comprising more than 100 companies and associations representing Rx pharma, generics, biotech, and diagnostics committed to tackling the threat of antimicrobial resistance.

 10:15 BST

Mobility Break

 10:25 BST

Patient Co-Creation within Global Patient Safety: Expert Patients and DEEPs

Charline Coquerel, Director and Head of Global Patient Relations, Novo Nordisk

Charline Coquerel is director and head of Global Patient Relations at Novo Nordisk. She is responsible for Novo Nordisk’s corporate patient engagement and advocacy strategy, ensuring there is a systematic approach for soliciting and integrating patients´ insights across the product development value-chain. She joined Novo Nordisk four years ago. Coquerel has over 16 years of industry experience in public affairs with a strong focus on advocacy and patient engagement, both at a global and local level.

Sara Mobäck, Global Diabetes Advocate

Sara was diagnosed with type 1 diabetes at age 13. A few years later, due to own internal pressure, she stopped eating carbs and exercised daily. This led to a 2016 diagnosis of anorexia.

Now Sara wants to encourage a positive perspective and way of living for people with diabetes. She regularly speaks at events and gives talks, and her blog about type 1 diabetes reaches thousands of people globally.

Ken Tait, DEEP Member and Diabetes Advocate

Ken Tait is originally from Edinburgh, Scotland where he worked and lived for many years as an electronic engineer, project manager and management consultant. Ken now resided in Bromley, Kent where he has been working as a psychotherapist and hypnotherapist, in which he has over twenty years’ experience.

Ken Tait was diagnosed with type 2 diabetes in March 1999. In 2015, Ken started up a peer support group to help those with diabetes to better manage their diabetes and now is the Chair of Diabetes UK – Bromley. As a psychotherapist Ken Tait has given talks about the effects of stress, anxiety and depression has on diabetes. Ken became a DEEP member in 2019 and is now a Diabetes Advocate, involved in projects locally, nationally, and internationally.

 10:55 BST

Partnering to Advance Patient Safety: the Role of Medical Technologies

While becoming more effective, healthcare has also become more complex, with greater use of new technologies, medicines and treatments. Technology, equipment and medical devices are vital for effective delivery throughout the continuum of care.

Medical technologies also help mitigate adverse events of diagnostic procedures, medication errors and harm that patients might experience during provision of health care.

But, they are also associated with risks.Safety of medical technologies is an inseparable aspect of care, equally important as its access or quality. The World Health Assembly’s Resolution 72.6 recognizes the importance of safe medical technologies in prevention of patient harm through early diagnosis and infection prevention, improved medication management, safe surgical and interventional procedures and support for management of chronic conditions.

The session will look into the different stakeholders’ perspectives on technology-associated risks and how to improve safety of medical devices, and prevent diagnostic and medication errors.

Melina Raso, Executive Director, Health First Europe (Moderator)

Since 2013, Melina has been working on EU issues regarding Health & Safety, and ICTs. She has experience in managing of European associations, planning and implemented tailor made events and outreach campaigns. She holds a Master degree in European and International Law from the University of Trieste, and an Executive Master in Communication and EU politics from the IHECS in Brussels.

Fiona Garín Mc Donagh, Senior Director for Strategic MarketingBD Europe

Fiona Garín has more than 25 years of experience in the health sector, with an international track record working in and across public and private sector organizations in developed and developing countries. She is currently the Senior Director for Strategic Marketing for BD Europe, responsible for leading cross-business, cross-functional and cross-country strategies and programmes in the region (including Healthcare Worker Safety, patient safety, efficiency, Marketing communications, and BD´s Center for Innovation and Engagement).

Fiona also leads the European BD Marketing Council and Health Economics and Outcomes Research efforts, and is a member of the European Leadership team and the Global Marketing Council. Fiona has also held several other positions within BD, being the Strategic Marketing and Innovation Director for BD Medical Procedural Solutions, BD’s director for influenza preparedness in Europe as well as BD´s worldwide director for strategic marketing for the immunization platform, responsible for directing overall strategic and marketing efforts to meet developing country safe immunization needs. Prior to joining BD, she was a Health Specialist at the World Bank, managing Health Reform Projects under preparation and implementation in Central America, and a consultant for several years in Price Waterhouse´s Strategic Consulting Group.

Kawaldip Sehmi, Chief Executive Officer, IAPO 

Kawaldip previously held the position of CEO at Richmond Psychosocial Foundation International and worked as Managing Director of Coram Children’s Legal Centre. He has European and international public health experience as Director of the Global Health Inequalities Programme and as Chairman of the European Network of Quitlines. Kawaldip’s qualifications include an MSc in the Public Health International Programme from the London School of Hygiene and Tropical Medicine, an MBA in Business Administration from the London Business School and Open University, and an LLB (Hons) from the London College of Law.

Patient Safety storyteller

 11:40 BST

Patient Involvement in Addressing AMR and Sepsis Risks

There remain two serious residual risks in our health systems that simply would not go away - antimicrobial resistance (AMR) and sepsis.

AMR undermines every aspect of medicine today, and by day we are losing one of the most powerful tools: the antibiotics. In 2014, the World Health Assembly Resolution 67.25 brought the issue of AMR to the front.

Sepsis is a global killer, yet largely preventable. In 2017, the World Health Assembly Resolution 70.7 prioritized the improving of prevention, diagnosis, and clinical management of sepsis, as a framework for a structured approach to sepsis prevention and management. We need concerted effort from the whole-of-health professional and whole-of-patient movement to support the whole-of-industry to eliminate both these risks.

This session will explore how the lessons from the current pandemic give us the opportunity to address this jointly as AMR and sepsis present serious challenges amongst patients.

Dr Neda Milevska-Kostova, IAPO Vice-Chair (Moderator)

Dr Neda Milevska-Kostova is president of Studiorum, a regional think-tank working on research and policy aspects of health and wellbeing in Europe. Neda has over 20 years experience in health research, policy and patient advocacy. She holds a MSc in functional pharmaceutics (University of Tokyo), MA in public policy (University of Pittsburgh, USA), and a PhD in public health (University of Sheffield, UK).

Neda is also a Vice-president of Health First Europe, an umbrella organization based in Belgium working on improving access to innovative health technologies in Europe. In 2018, she was awarded the title Primarius by the Minister of Health for exceptional and long-term commitment to the advancement of health system and population health in Macedonia.

Dr Bruce Altevogt, Vice President and Head External Medical Engagement, Pfizer Inc.'s Hospital Business Unit

Bruce Altevogt is Vice President and Head External Medical Engagement within Pfizer Inc.'s Hospital Business Unit. In this role Dr. Altevogt is responsible for the business unit’s patient engagement strategy and oversees Pfizer’s industry leading AMR surveillance program, ATLAS. Prior to this role he was a Senior Director of Science Policy, where he was responsible for managing policy issues in support of Pfizer’s research & development enterprise, vaccines and was lead for AMR policy. Dr. Altevogt serves as member of the AMR Alliance Board, an organization that measures and drives the life-sciences industry progress to curb antimicrobial resistance. Dr. Altevogt received a doctorate from Harvard University and a B.A. from the University of Virginia.

Danjuma Adda, Executive Director, Centre for Initiative and Development (CFID) Taraba & Chagro-Care Trust

Danjuma is a Nigerian prince and accomplished Public health expert on a mission to raise awareness about Hepatitis. Danjuma was infected with Hep B while in clinical rotations and then lost his own mother to the disease several years later. Even though Hepatitis kills more people per year than HIV/AIDS, it receives just a fraction of the global health funding. Danjuma is a leading voice for Hepatitis patients in Nigeria and uses his platform to advocate for the most vulnerable populations across Africa. He wants to change the narrative about Hepatitis and raise awareness about the deadliness of the disease.

Dr Konrad Rheinhart, MD, President, Global Sepsis Alliance

Konrad is recognised as an international champion of sepsis. He is chair of the Global Sepsis Alliance and one of the key initiators of World Sepsis Day. He is a member and was chairman of the International Sepsis Forum and a member of the Council of the World Federation of Societies of Intensive & Critical Care Medicine from 2008-2013.

In Germany he is member of the German National Academy of Science Leopoldina and Chairman of the Sepsis-Foundation. He was funding President of the German Sepsis Society and its president from 2001- 2009. As speaker of the nation-wide German research network SepNet he initiated landmark studies on the efficacy and safety of therapeutic approaches in sepsis as well as on the epidemiology of sepsis in Germany. He was initiator of the Center for Sepsis Control & Care (CSCC) at Jena University Hospital.

His research activities in the field of sepsis and intensive care medicine led to more than 750 peer reviewed publications and the Research Award of the Federal State of Thuringia/Germany. As Senior Professor at the CSCC, his publicly funded research is focused on quality improvement of sepsis management and long term sequelae of sepsis.

 12:25 BST

Mobility Break

 12:35 BST

Holistic Patient and Health Worker Safety: Hospital, Care Facility and Self-Care

Patient safety must be considered along the entire continuum of health care, irrespective where it takes place. We must make this care continuum safe throughout. With most patients with chronic conditions shielding in self-isolation, their healthcare has transferred into their homes. Self-care and home-based care have played a big role in reducing pressure on health systems. The use of telemedicine and other digital solutions have helped. This poses serious patient safety risks if your home, carer, or your self-care practice is unsafe.

The uptake of telemedicine and popularisation of homed-based care must look at patient safety afresh. This session will discuss the next steps in developing a patient safety culture within responsible self-care and self-medication. It will also highlight the issue of Personal Protective Equipment as it relates both to the patients and their carers in all settings. We must address this now before the next phases of the pandemic.

Dr Peter Lachman, MD, Chief Executive Officer, International Society for Quality in Health Care (Moderator)

Peter Lachman M.D. MPH. M.B.B.Ch., FRCPCH, FCP (SA), FRCPI assumed the position of ISQua Chief Executive Officer on 1st May 2016. He has great experience as a clinician and leader in quality improvement and patient safety.

Dr Lachman was a Health Foundation Quality Improvement Fellow at IHI in 2005-2006, and developed the quality improvement programme at Great Ormond Street Hospital where he was the Deputy Medical Director with the lead for Patient Safety. Prior to joining ISQua, Peter was also a Consultant Paediatrician at the Royal Free Hospital in London specialising in the challenge of long term conditions for children.

Dr Lachman has been the National Clinical Lead for SAFE, a Heath Foundation funded RCPCH programme which aims to improve situation awareness in clinical teams. In Ireland he is Lead International Faculty at the RCPI in Dublin, where he co-directs the Leadership and Quality programme to develop clinical leaders in quality improvement. He is co-founder and Chairperson of PIPSQC, the Paediatric International Patient Safety and Quality Community.

Dr Neelam Dhingra, MD, Coordinator of Patient Safety and Risk Management, World Health Organization

Dr Dhingra leads WHO’s efforts at providing strategic leadership on patient safety and risk management within the context of improving people-centred integrated health services delivery and UHC. Dr Dhingra coordinates WHO’s work for improving patient safety and managing risks in health care, including Global Patient Safety Challenge on medication safety; leadership; safety culture; education and training; patient safety standards, assessments, research and measurement; global patient safety networks; safety and quality tools and checklists (Safe Childbirth & Surgical Safety); reporting and learning systems; patient and family engagement including Patients for Patient Safety; safer primary care; diagnostic safety; standardizing care processes; and patient safety solutions. Since joining WHO in 2000, Dr Dhingra has been providing strategic leadership and facilitating multi-country support for strengthening blood transfusion services. From 2015, Dr Dhingra is coordinating WHO global efforts in the areas of patient safety, quality improvement and risk management. Prior to joining WHO, Dr Dhingra served as a medical faculty in a large, tertiary care university teaching hospital in New Delhi, India for 14 years, also coordinating transfusion and laboratory services, after medical and specialist qualifications from New Delhi and UK fellowships.

Judy Stenmark, Director General, Global Self-Care Federation

Judy was appointed Director General for the association on September 1, 2018. She has a long-standing career leading global and national associations with her recent five-year tenure as the head of the International Osteoporosis Foundation in Geneva, and nine years leading Osteoporosis Australia. An Australian national, Judy has spent the last eight years living and working in Switzerland. In this time, she established a strong network within global healthcare institutions, including the World Health Organization, United Nations, international scientific academia and among many global pharmaceutical and consumer health companies. She will be an invaluable addition to WSMI, and lead the organization into its next phase.

Monika Lessl, Senior Vice President, Head of Corporate R&D and Social Innovation Bayer AG & Executive Director, Bayer Foundation

 

Monika Lessl is Head of Corporate Innovation, R&D and Societal Engagement at Bayer AG and Executive Director of the Bayer Foundation. Her focus is on driving organizational and societal transformation by leveraging the power of Innovation and strengthening sustainability. In her role she is promoting new scientific technologies and data science, Open Innovation and Social Innovation to find news solutions in health and nutrition addressing the needs of a growing and aging population. Monika Lessl is also a member of the supervisory board of the Berlin Museum "Futurium" and jury member of the European Innovation Council.

 13:20 BST

EUPATI Research and Development of Safer Medicines

This session looks at the European Patients Academy on Therapeutic Innovation (EUPATI) and its influence on patient engagement in research and development of safer medicines and healthcare.

In many countries we have national institutes for health research developed to give their Universal Health Coverage (UHC) access to outstanding individuals, working in world-class facilities conducting leading-edge research focused on the needs of patients and the public. This has transformed research in and for UHC and helped to shape the health research landscape more broadly. EUPATI has supplied these outstanding patients (EUPATI Fellows) to many health systems.

UHC 2030 needs to incorporate patient safety and safe medicines development into its heart. This demands close links between the pharmaceutical industry, capacity builders, researchers and health systems to ensure continued improvement in safe medicines development and medication safety.

Camilla Krogh Lauritzen, Chief Patient Officer and Head of Patient Engagement, LEO Pharma (Moderator)

Anchored in the Research organization at LEO Pharma, my team and I are responsible for driving key deliveries to LEO´s 2025 strategy that targets development of intervention against some of this World’s most painful and life-threatening genetic and autoimmune diseases for which no treatment or cure currently exist.

To that end, I have established the Patient Engagement function at LEO, implying a responsibility for the strategic and operational patient engagement activities. This is to ensure that all key decisions are informed by patient KOLs and communities, as well as executed in partnership with the mentioned.

Prior to joining LEO in May 2018, I established and led the Patient Engagement function at Abbott, AbbVie and Novo Nordisk. Prior to joining pharma, I worked for science/patient alliances and for patient organizations. In my view and experience, ‘Patients’ are indeed disease experience experts, and at LEO this translates into a ‘Nothing About You Without You’ mantra and commitment that shapes our approach, and we strive daily to develop solution for people affected by rare disease with severe skin manifestations (click here for more information on what our commitment looks like in practical terms).

In terms of academic training, I hold Master degrees in Molecular Biology, Corporate Communication and Business Administration.

Lasse Funch Jacobsen, Senior Lead of Patient Research and Alliances, LEO Pharma

Lasse brings 10 years of experience from working in pharma – the last 4 years in Patient Engagement teams across two different pharma companies. Lasse has helped establish functions that ensures that the patient’s voice is not only heard, but also implemented throughout the value chain from early research to product. Lasse has been part of numerous initiatives and coalitions across Academia, Patient Organisations and Industry working together to help improve the lives of people living with chronic diseases.

Dr Tamás Bereczky, Course Coordinator, Content Developer and Trainer, EUPATI

Tamás currently works as the course coordinator, content developer and trainer of EUPATI The European Patients’ Academy for Therapeutic Innovation. Before that, he was member of the European AIDS Treatment Group, the largest European network of individuals living with HIV for 15 years, also working as its communications officer between 2015 and 2018. HIV positive since 2003, he served as a member of the board of directors of the EATG for almost 4 years, and also served the co-chair of the European Commission’s Civil Society Forum on HIV/AIDS between 2013 and 2015. Tamás also works as a partner and consultant in the patient-led and focused strategic advisory Patvocates.

 13:50 BST

Community Pharmacists - Medication and Overall Patient Safety

Community Pharmacists are often considered the 4th emergency service (after police, ambulance, and fire fighters). During COVID-19 they were placed at considerable risk while serving patients who were shielding. Patient safety is now a concern for all frontline healthcare professionals as well as their employers. All community pharmacists, pharmacy technicians and pharmacy support staff have recognised the importance of safely dispensing medication and providing appropriate advice to patients and the public. This session will celebrate their achievement by sharing their experience.

Bisi Bright, FPCPharm, FPSN, MPH, MNIM, 1st Vice Chairman, CEO and Founder, LiveWell Initiative LWI (Moderator)

Bisi Bright is a Pharmacist, Lecturer and Public Health Manager. She is 1st Vice Chairman, CEO and Founder of LiveWell Initiative LWI, a self-sustaining nonprofit. She is an Internship Preceptor at Harvard T H Chan School of Public Health, Boston USA and, a Doctoral Thesis Co-Supervisor at the University of Helsinki in Finland, with publications in internationally recognised peer reviewed journals. She served as IAPO Regional Steering Committee Member for Africa from 2011-2013; and delivered a paper at the inaugural Africa Regional IAPO Meeting in Johnnesburg, in 2013. She led LWI to win the first-ever IAPO Global Photocontest at PSD 2013 with a photo titled TRIPLETS. At the global level, Bisi Bright served on the FIP as HMiS Africa/Middle East Rep and served on 3 International Working Groups including Patients as Partners Working Group, an IAPO-Partnered Project.. Bisi founded another PatientsOrganisation, Women in Hepatitis Africa WIHA in 2017, and doubles as Deputy National Coordinator of the Hepatitis national chapter in Nigeria, Exco of the Healthcare Federation of Nigeria HFN. Her latest work is in relation to COVID-19 Study Protocols and Prophylaxis Clinical Trials Research and Covid Resilience for greater impact. Bisi Bright is happily married and well travelled.

Dr Catherine Duggan, Chief Executive Officer, International Pharmaceutical Federation

Dr Catherine Duggan is the Chief Executive Officer of the International Pharmaceutical Federation. She took up the role in The Hague in June 2018. Catherine is responsible for visionary leadership, support, development and advocacy across the 144 member organisations and the four million members FIP represents. Until April 2018, Dr Catherine Duggan was the Director of Professional Development at the Royal Pharmaceutical Society of Great Britain. From 2012, Catherine led the development, implementation and strategic embedding of RPS Faculty and Foundation programmes into continuing professional development.

Dr Anantha Naik Nagappa, President, Association of Community Pharmacist of India & Director, Amity Institute of Pharmacy, Amity University of Madhya Pradesh

Dr. A N Nagappa had his education and work experience from BITS, Pilani, Manipal University for 40 years. He is actively engaged in IAPO programs like patients solidarity day. He had participated in several annual conferences of IAPO, ISOPP and ISPOR. His lifetime mission statement is "Pharmacuetical Care Every Where".

He is presently working as Director of Amity Institute of Pharmacy, AUMP, Gwalior Madhya Pradesh. He had pioneered in areas like home medication review, community Pharmacy services, health screening, generic medicine Pharmacoeconmics and Outcome research.

He is participating in patient counceling activity in University Health Center along with the faculty, staff and students of Amity University of Madhya Pradesh.

 14:20 BST

Mobility Break

 14:30 BST

Regulatory Harmonisation for Access to Safe Medicines, Vaccines and Health Devices

For truly patient centric healthcare, we must have healthcare that is safe, quality, and effective. The medicines and health devices regulators ensure that this happens.

Within a global world, this means we must have a harmonised global regulatory system and standards that ensure patients get safe and quality medicines, vaccines, and health devices wherever they are. Patients must engage in the regulatory activity to ensure we have safe and quality medicines, vaccines, and health devices globally.

The three regulators will share their experiences of patient engagement in regulatory affairs and in regulatory reliance as one way to ensure this harmonisation.

Dr David Jefferys, MD,Senior Vice President for Global Regulatory, Healthcare Policy and Corporate Affairs, Eisai Europe, International Federation of Pharmaceutical Manufacturers & Associations (Moderator)

Senior Vice President, Global Regulatory, Government Relations, Public Affairs and European Product Safety Eisai Europe Ltd on behalf of IFPMA. Previously practising as a physician/cardiologist, with additional interests in metabolic medicine/clinical toxicology and since spending 21 years as a senior regulatory in the UK/Europe. Previously executive director of licensing in MCA, CPMP member, chairman of the MRFG and PER committees. Previously CEO and Director of the UK Medical Devices Agency and on creation of the MHRA acting joint chief executive. Also working on secondment at the EMEA /EMA on benefit risk methodologies.

Currently chairman of the ABPI regulatory committee and a member of the Innovation Board. Also chairs the EFPIA Regulatory Committee and sits on the International Regulatory Board.

Chairman of the IFPMA Regulatory Science Committee, a member of the IFPMA Council and of the ICH Committee and General Assembly.

He is a past chairman of the CMR Advisory Board and currently sits as a member of the CIRS Scientific Advisory Council.

Andrea Furia-Helms, MPH, Director of the Patient Affairs Staff in the Office of Clinical Policy and Programs, Office of the Commissioner,  U.S. Food and Drug Administration

Andrea Furia-Helms is the Director of the Patient Affairs Staff in the Office of Clinical Policy and Programs, Office of the Commissioner. In her role, she collaborates with patient communities, the FDA medical product Centers and other offices to incorporate patient and caregiver perspectives in cross-cutting regulatory meetings. Ms. Furia-Helms spent over ten years in the FDA’s Office of Health and Constituent Affairs where she directed the FDA Patient Representative Program and coordinated patient engagement activities for the agency.

Prior to FDA, Ms. Furia-Helms was Director of the Back to Sleep (now Safe to Sleep) campaign, a public-private partnership to educate communities on Sudden Infant Death Syndrome (SIDS), at the National Institutes of Health. She developed SIDS outreach initiatives for African American, American Indian and Latino communities.

Ms. Furia-Helms has a B.A. in psychology from Framingham State University, a B.S. degree in community health education from University of Maryland, and a Master of Public Health degree from The George Washington University.

Nathalie Bere, MPH, Patient Relations Coordinator, European Medicines Agency

Nathalie has been working with the European Medicines Agency in London for over 20 years and is currently responsible for its engagement with patients and consumers. Patients bring specific knowledge and expertise from their real-life experience of the condition and its treatment to the scientific discussions, and their contributions have led to better outcomes for everyone involved.

Over the years, she has been dedicated to creating opportunities for the inclusion of the patient’s voice in every aspect of the regulatory lifecycle of a medicine. Experience at EMA has demonstrated that it is essential to be flexible and to test and implement a range of engagement methodologies to best suit the various activities.

As a steady increase in patient engagement at EMA has been observed, Nathalie will look to further strengthen these activities through constant exchanges with all stakeholders to ensure interactions are as mutually beneficial as possible.

Nathalie holds a Master’s in Public Health from the University of East London (UEL) and has a Bachelor of Science in Psychology.

 15:15 BST

The Fundamentals of Supporting Health Worker and Patient Safety

 

Dr Joanne Waldstreicher, MD, Chief Medical Officer, Johnson & Johnson

Joanne Waldstreicher, M.D., is Chief Medical Officer, Johnson & Johnson. In this role, she has oversight across pharmaceuticals, devices and consumer products for safety, epidemiology, clinical and regulatory operations transformation, collaborations on ethical science, and technology and R&D policies, including those related to clinical trial transparency and compassionate access. She chairs the R&D Development Pipeline Review Committee for The Janssen Pharmaceutical Companies of Johnson & Johnson, and supports the Device and Consumer Development Committees. Joanne is also a faculty affiliate of the Division of Medical Ethics, Department of Population Health, New York University School of Medicine.

Among her prior roles, Joanne was responsible for late-stage development in neuroscience, cardiovascular disease and metabolism at Janssen. Before joining Johnson & Johnson in 2002, she headed endocrinology and metabolism clinical research at Merck Research Laboratories, overseeing development programs in atherosclerosis, obesity, diabetes, urology and dermatology. She was honored with the Key Innovator Award, among other distinctions..

 15:30 BST

Keynote Speech: Financing UHC 2030 and Health System Recovery

Our health systems today need to not only justify investment to repair the COVID-19 related damage, but also investment to accelerate progress towards Universal Health Coverage (UHC). Under the United Nations High Level Political Meeting Declaration on UHC, Member States promised to invest in extending their healthcare services to cover more of their population, enhance their basic healthcare service packages by including comprehensive and innovative services, and reduce the out-of-pocket costs for patients. Health should be perceived not as a reward for development, but as its prerequisite.

This keynote speech will provide an overview of challenges and opportunities, as well as lessons learnt from the current pandemic for health systems’ financing.

Dr Neda Milevska-Kostova, IAPO Vice-Chair (Discussant)

Dr Neda Milevska-Kostova is president of Studiorum, a regional think-tank working on research and policy aspects of health and wellbeing in Europe. Neda has over 20 years experience in health research, policy and patient advocacy. She holds a MSc in functional pharmaceutics (University of Tokyo), MA in public policy (University of Pittsburgh, USA), and a PhD in public health (University of Sheffield, UK).

Neda is also a Vice-president of Health First Europe, an umbrella organization based in Belgium working on improving access to innovative health technologies in Europe. In 2018, she was awarded the title Primarius by the Minister of Health for exceptional and long-term commitment to the advancement of health system and population health in Macedonia.

Joseph Kutzin, Head of Health Financing Team, World Health Organization

Joe Kutzin leads WHO’s health financing team in Geneva. He is a health economist with 35 years’ experience, working in Africa, Asia, the Caribbean, Europe, and the United States. Since joining WHO in 1994, he has served as WHO policy advisor to the Ministry of Health of Kyrgyzstan, and also as the European Region’s Lead Advisor on Health Financing. Prior to that he worked at the World Bank. He was a contributor to the World Health Report 2010 on financing for universal coverage and has published numerous conceptual and empirical articles on health systems, health financing and Universal Health Coverage.

 16:00 BST

Patients Shouting Café

The Patient Shouting Café is a great programme run by IAPO Member Korea Alliance of Patients’ Organizations (KAPO). The Patient Shouting Café will conclude the virtual GPC 2020 by giving patients an opportunity to share their stories of patient harm, denial of access, discrimination and any other challenges they faced in access to or safety and quality of care.

Kawaldip Sehmi, Chief Executive Officer, IAPO (Moderator)

Kawaldip previously held the position of CEO at Richmond Psychosocial Foundation International and worked as Managing Director of Coram Children’s Legal Centre. He has European and international public health experience as Director of the Global Health Inequalities Programme and as Chairman of the European Network of Quitlines. Kawaldip’s qualifications include an MSc in the Public Health International Programme from the London School of Hygiene and Tropical Medicine, an MBA in Business Administration from the London Business School and Open University, and an LLB (Hons) from the London College of Law.

Gi-jong An, President, Korea Alliance of Patients’ Organizations

Gi-Jong An was born in South Korea in 1970 and studied Law at the Hanyang University of Korea. His wife received a diagnosis of chronic myeloid leukemia in 2001 and he received a diagnosis of thyroid cancer in 2009. He has been working for Korean patients’ rights since 2002 when he was involved in the issue of patients’ access to the ‘Gleevec’ anticancer drug. He is a representative of the Korea Leukemia Patient Group which involves 10,000 members as well as the Korea Alliance of Patients' Organizations, representing 35,000 patients from seven patients’ organizations. Gi-Jong is proactively participating in various public health activities and governances including the National Health Insurance Policy Deliberation committee (a Healthcare-related top decision-making body in Korea), the Korea Medical Dispute Mediation and Arbitration Agency and the Korea Patient Right Ombudsman.

Heo Hee-jung, mother of Kim Jae Youn, Leukemia patient

6 year old Leukemia patient Jae Youn Kim, who has been on Chemotherapy at the age of 3, died due to overdose of sleeping pill in an injection room with poor oxygen and emergency kits. Mrs. Heo launched a campaign to demand the government to establish a measure to prevent recurrence by issuing cautionary warnings and improve guidelines for  "safe use of paediatric sleep sedatives" and "compulsory report of critical patients safety accident".

Flavia Kyomukama, Executive Director, Action Group for Health Human Rights and HIV/AIDS

Flavia Kyomukama, Executive Director, Action Group for Health Human Rights and HIV/AIDS

Dalilah Kalla, Secretary, Lupus Alert

Growing up on the small island of Mauritius, Dalilah received the unexpected diagnosis of lupus at the very young age of 13. She was overwhelmed with feelings of despair, helplessness and hopelessness. Her mother made her realise that living a life paralysed with fear was really not living at all. She adjusted her life to accommodate lupus and its demands and to the impact of strong daily medications. In 2000, she founded Lupus Alert, the only registered non-profit organisation dedicated to improving the lives of people with lupus and other autoimmune diseases through advocacy, education, public awareness, genetic research and clinical trials. Lupus Alert is a learning non profit organisation that is constantly looking for new knowledge and achieving good results without much financial assistance. It is an organisation that is filled with passion, vision, commitment, motivation and determination. They are ordinary people who do extraordinary things!

 16:45 BST

Closing Session

Dr Ratna Devi, IAPO Chair

Dr. Ratna Devi is the CEO and Co-founder of DakshamA Health and Education, an organisation that is dedicated to working for access to health, patient education and advocacy. DakshamA aims to create a network of caregivers and patient groups, and work with them on knowledge sharing as well as providing essential feedback for managing long term and chronic diseases. She leads a cross disease Patient Alliance in India called Indian Alliance of Patient Groups (IAPG), Board member HIA (Healthy India Alliance – the National NCD Alliance in India) and I – ORD (Indian Organisation for Rare Diseases). She holds an MBBS degree from Sambalpur University and a dual MBA from SYMBIOSIS and Manipal Institute of Distance Education. Dr. Devi also holds advisory positions at several NGOs and has contributed to research as well as publications.

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Frequently Asked Questions

You will get to experience the live online conference as well as access all recordings of all sessions on demand for 30 days after the live event! You will have the opportunity to download valuable educational materials to access later and the opportunity to chat with patient and policy experts.
The event will remain open 24/7 for 30 days. Therefore, you can attend whenever it’s convenient for you during this period of time.
Your login details will be emailed to you ahead of the event. You can use these details to access the online event.
NO. You do not need to download or install any software to participate in our conference. You only need to have access to the Internet.
We recommend Google Chrome.
Yes, you will be provided login credentials to test the system and get familiar with the interface.
A swag bag is a virtual briefcase where you can save documents from an exhibition booth. You can access files in your Swag Bag for 2 weeks after the event and email them to yourself or others.
You will be able to chat with exhibitors during designated times. For any questions, contact them using the information provided on their booths.
Yes. Only the exhibitor you are chatting with will be able to see your messages.
Absolutely. We are counting on you to invite others! Help us spread the word. You can simply share the link to this page, and they can register at their convenience.
Yes, you may contact the vfairs technical support team during the event via infodesk.
For the latest information on the Congress, ‘like’ IAPO on Facebook and follow us on Twitter. Additionally you can follow and join the buzz on social media using #GPC2020 #WorldPatientSafetyDay.
If you have any further questions about the Congress, please do not hesitate to contact us by email at info@iapo.org.uk

GPC 2020 Theme - Co-creation in Innovative Healthcare during COVID-19

World Health Organization’s Director-General (WHO DG) Tedros Adhanom Ghebreyesus at the historic virtual and de minimis 73rd World Health Assembly in May 2020 said that the world had come together virtually to confront the defining health crisis of our time.

Our virtual 9th Global Patients Congress 16-17th September 2020 (GPC 2020) is an equally important moment to reflect upon the impact of the pandemic on our global patient community and our health systems. It is also a moment for patients to engage in focused discussion on health systems strengthening and preparedness through patient led and co-created innovative solutions.

The world now needs a whole-of-government and whole-of-society response to engage and empower people and communities to keep themselves and others safe to control the COVID-19 pandemic. The WHO DG has reminded us of the challenge ahead: it will take hard work and high fidelity to science in all decision-making, especially within some exceedingly difficult decisions to come in maintaining effective test, treat, cure and shield programmes without breaching human rights and privacy of patients with pressure to end lockdowns and jump start economies.

From the initial global COVID-19 infection related mortality and morbidity statistics, we can see that patients with chronic conditions, especially those with multimorbidity, had the worst outcomes. It was also noticeably clear that many of our health systems did not have capacity to shield immunocompromised patients behind effective patient centred and evidence based shielding programmes. It is important that we address this failure.

However, we also saw some innovative patient led good practice as many health systems began to provide virtual and digital healthcare services. A lot of primary healthcare reverted to telemedicine and remote peer-to-peer (expert-patient to new patient) supported self-care and home-based care solutions that alleviated some of the mental health pressures affecting those in self-isolation. Patients must continue participating in co-creating other innovative solutions. Nothing about us without us.



Window of Opportunity

Holding our 9th Global Patients Congress in the middle of a pandemic gives our global patient community a strategic opportunity to share our patient experiences and patient perspectives with our healthcare policy makers through a global platform. It opens a door for us to join the whole-of-government and whole-of-society effort to control the pandemic and rebuild our health systems as a whole-of-patient community.

The World Health Assembly Resolution WHA73.1 Agenda item 3 (May 2020) gives the GPC 2020 a great mandate to ensure that the World Health Organization Member States (MS) quickly strengthen and fix the disrupted healthcare services. COVID-19 has damaged many services and WHO MS must accelerate the implementation of patient centred measures to provide a sufficient quantity of safe, quality, accessible, acceptable and affordable healthcare services, medicines and devices (including PPE) to all again.

IAPO will hold Day 2 of the GPC 2020 to mark the World Patient Safety Day on 17th September 2020. We will bring home the theme of the day that the COVID-19 pandemic has proved that without health worker safety, there can be no patient safety.

Never have we witnessed a situation where patients lost complete trust in their health systems en masse. Fearing acquiring nosocomial COVID-19 infections from their health facilities, patients avoided seeking medical services in droves. Many even shunned acute healthcare needs by avoiding the accident and emergency services in falls and suspected strokes and heart attacks.

COVID-19 shamed and overstretched our health systems and demotivated the health workforce, many are now experiencing severe mental health trauma. The damaged healthcare systems can no longer continue providing safe, quality, acceptable, affordable, and patient centric healthcare services, and medicines. This will impact negatively on outcomes of most noncommunicable diseases that needed secondary prevention services and regular monitoring clinics and follow-ups.

The GPC 2020 is an opportunity for us to start rebuilding and strengthening our health systems and co-create safe, innovative, robust and resilient health systems future proofed against any upcoming health related emergency shocks.

It will also be a moment to remind ourselves of WHO DG’s words that health is not a cost; it is an investment. Health is not a reward for development; it is a prerequisite. Health is a pathway to security, prosperity, and peace. We must address this common problem through national unity and global solidarity. The GPC 2020 is very special for us this year.