8:00 - 9:00

Welcome, Networking and Registration 

9:00 - 09:45

Opening Ceremony & Keynote Speech: Patient partnerships and their value within the global healthcare ecosystem

Dr Neda Milevska-Kostova, Chair, International Alliance of Patients’ Organizations (IAPO) & President, IAPO Patients for Patient Safety Observatory

Kawaldip Sehmi, CEO, International Alliance of Patients’ Organizations (IAPO)

Hon. Dr. Tinte Itinteang, Minister of Health and Medical Services - Kiribati [Keynote Speaker]

Penilla Gunther, Founder, FOKUS Patient® [Responder]

09:45 - 11:15

Promoting novel patient partnerships in research and development of innovative medicines and health devices

Greg Perry, International Federation of Pharmaceutical Manufacturers Association (IFPMA) [Moderator]

Julia Spencer, Associate Vice President, Global Multilateral Engagement, Strategic Alliances and International Relations, MSD

Dr Shahid Hanif, Managing Director, GetReal Institute

Maria Dutarte, Executive Director, European Patients’ Academy on Therapeutic Innovation (EUPATI)

Tony Holland, Board Member, International Alliance of Patients’ Organizations (IAPO) & President, International Prader-Willi Syndrome Organisation (IPWSO)

Bisi Bright, Board Member, International Alliance of Patients’ Organizations (IAPO) & 1st Vice Chairman and CEO, LiveWell Initiative LWI

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For the past 75 years, the World Health Organization (WHO) has been a unique global partnership in health between many State and Non-State Actors. The public, private and societal/patient partnership that developed and found new agilities during the pandemic in medicines and health technology research and development (R&D) is the way forward. The WHO has led the way in promoting, standardising, and regulating novel health technologies, including medicine and health devices. 

This is a very important time to reflect upon the past and learnt lessons for the future in improving the process of researching and developing innovative medicines and health devices that treat the disease and meet the needs of patients effectively, efficiently and in a patient-centred manner. The most important change has been at the patient engagement in R&D level. The focus has shifted away from the medicine/product and on to patient experiences, perspectives, needs, and priorities, and moved the temporal focus from short- to the long-term outcomes over the lifecycle of the drug.

Patient partnerships will drive future research and development of these innovative medicines and health devices that will ensure our health systems become personalised and participatory, focussing on early diagnosis and predicting/prevention first. Treat at earliest is most effectively. This session will therefore look at why patients need to engage in medicine and health devices research and development (R&D).

Networking Coffee

11:45 - 13:30

Developing robust and resilient patient partnerships with health professionals to promote patient-centred, compassionate and humanised healthcare 

Kawaldip Sehmi, CEO, International Alliance of Patients’ Organizations (IAPO) [Moderator]

Dr Osahon Enabulele, President, World Medical Association

Howard Catton, Chief Executive Officer, International Council Nurses

Dr Catherine Duggan, Chief Executive Officer, International Pharmaceutical Federation

Prof Lara Bloom, Board Member, International Alliance of Patients’ Organizations (IAPO) & President and CEO, The Ehlers-Danlos Society

Nicola Bedlington, Founding Partner, Millwater Partners & Special Adviser, European Patients' Forum & External Advisory Committee Member, International Experience Exchange with Patient Organisations (IEEPO)

Rod Padua, Strategic Advisor and Council Member, Alliance & Partnerships for Patient Innovation & Solutions (APPIS)

Dr Mahmood Al-Hamody, Vice-President for External Affairs, International Federation of Medical Students Associations (IFMSA)

Dr Yifan Zhou, Chairperson of External Relations, International Pharmacy Student Federation (IPSF)

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Robust and innovative ‘patient- health professional’ partnerships are transforming the healthcare landscape and ecosystem. Today patients are working with professional associations in a meaningful way to influence health professional education, training, and relationships. This benefits both partners and it impacts patient outcomes and experience, if not equity. This session looks at the best partnership examples and reflects on other models proposed after the pandemic. 

Dehumanised healthcare adversely affects the ‘health professional-patient’ relationship and significantly undermines the patients’ and caregivers’ trust in the healthcare system. The health professionals are impacted too. If they are evaluated against narrow performance measure targets to assess their professional performance, they can become demotivated and stressed. The health professional, especially nurses in this post pandemic period, are not respected in many health systems as a valuable resource but treated as a disposable cost in healthcare. Many health professionals now experience stress, burnout, and compassion fatigue. 

Both humanising and compassionate healthcare approaches go beyond the focus of respect for patient’s dignity, uniqueness, and individuality. Both advocate that we humanise the entire healthcare value chain and shift additional focus on the stakeholders. We need to humanise the relational, organisational, and structural arrangements to ensure we have adequate working conditions and sufficient human and material resources.

This session will look at why patient partnerships with doctors, nurses, and other health professionals are important at all levels of your healthcare system, and how they can impact upon both the patient outcomes and health professional esteem, welfare and health and wellbeing.

13:30 - 14:30

Networking Lunch

14:30 - 16:00

Evolving novel patient partnerships in genomic personalised medicine and digital health- AI and machine learning

Sanja Njegic, Executive Director, Head International Patient Affairs, BioMarin [Moderator]

Dr Sawsan A. AlMadhi, Advocacy Advisor, CEO & Founder, AlignnEficient Health Consultancies CO LLC

Dr Rosyln (Roz) Schneider, Vice President, Head of Global Patient Affairs, BioMarin

Dr Maira Caleffi, MD PhD, IEEPO External Advisory Committee Member

Paul Mendonza, Board Member, International Alliance of Patients’ Organizations (IAPO) & President, Psoriasis Philippines

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The next decade will increasingly see many innovative disrupter health technologies emerge from the convergence of genomic medicine with artificial intelligence and digital healthcare solutions.  IAPO has been active in the Personalised Cancer Care Alliance (PCCA) and has contributed to a PCCA position paper that advocates greater State investment to boost economies of scale in the adoption of genomic medicine, digital health, artificial intelligence, machine learning and other health technologies. These health technologies will make cancer control and care more predictive, preventative, personalised, participatory and pre-emptive (the 5 Ps). 

These disrupter health technologies will help in compassionate and humanised healthcare. The benefits preventing and treating disease in a timely manner depends upon our accurate and timely prediction of what diseases will affect whom, where, and when within our populations. This can transform our health systems enormously. This session will explore how patient partnerships can help in initiating personalised healthcare and how this can help early diagnosis and prevention of diseases.

Building national innovative patient and family partnerships in support of the Global Patient Safety Action Plan: Tomorrows safe primary healthcare, hospitals and health facilities

Kawaldip Sehmi, CEO, International Alliance of Patients’ Organizations (IAPO) [Moderator]

Dr Neelam Dhingra, Head, Patient Safety Flagship: A Decade of Patient Safety 2021-2030, World Health Organization

Dr Neda Milevska-Kostova, Chair, International Alliance of Patients’ Organizations (IAPO) & President, IAPO Patients for Patient Safety Observatory

Dr Luis Castrillo, Past-president & Co-chair of the EM-Day Workgroup & Member of the Wellbeing Group, European Society for Emergency Medicine (EUSEM)

Ana Elisa M. Barbar, Adviser to the Health Unit - Health Care in Danger Initiative, International Committee of the Red Cross (ICRC)

Flavia Kyomukama, Executive Director, Action Group For Health, Human Rights and HIV/AIDS in Uganda

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The World Health Organization (WHO)’s Global Patient Safety Action Plan 2021-30 (GPSAP) aims to ensure that we are delivering a safe universal health coverage by ensuring all our health systems have reduced all avoidable patient harm to zero by 2030. The Plan recognises that patient safety is everyone’s responsibility. This means that the patient organisations, healthcare providers, regulators, medicines and devices manufacturers, professional bodies and academia and the government must work together in innovative partnerships. The WHO Director General will give us the first baseline report at WHA 76.

Meaningful patient and family engagement in patient safety is one of the main pillars of the GPSA Plan. IAPO has been an active partner in the Global Patient Safety Network, has supported the WHO GPSAP and marked the World Patient Safety Day on 17th September each year.

This session looks at what constitutes a good patient, family, and health institute partnership. It also explores what action each stakeholder must take to make our health systems and the universal health coverage safe for all. 

8:00 - 9:00

Welcome, Networking and Registration  

9:00 - 10:30

Emphasizing the critical need for patient partnerships in medicines and health devices regulation 

Karen Alparce-Villanueva, President, Philippine Alliance of Patient Organizations (PAPO) [Moderator]

Dr Lembit Rägo,  Secretary-General, Council for International Organizations of Medical Sciences (CIOMS)

Janis Bernat, Director, Scientific & Regulatory Affairs, International Federation of Pharmaceutical Manufacturers Association (IFPMA)

Dr Maria Mavris, PhD, Public and Stakeholder Engagement Department - Stakeholders and Communication Division, European Medicines Agency (EMA)

Marie Valentin, Technical Officer, Regulatory Convergence and Networks Team, World Health Organization

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For compassionate, humanised, and patient centric healthcare to happen, we must ensure that the entire healthcare value chain delivers services, medicines and health devices that are of high quality, safe and effective. The medicines and health devices regulators can ensure that this happens. 

Market authorisation of innovative medicines and health devices must happen at the same pace and time globally to prevent regional inequity which develops if medicines approval is delayed in some countries, while others have advanced. COVID-19 vaccines market authorisations delays revealed to us how this inequity can impact our health and wellbeing. 

During the pandemic, the value of regulatory reliance and early and thorough regulatory approval of innovative and repurposed medicines was critical. This required a whole of government, industry, and patient community partnership with their national medicines regulatory authority. The best outcomes were achieved in regions where new agilities were developed and innovative medicines regulatory pathways created.

In Europe, the meaningful engagement of patients within the European Medicines Agency was critical. The lessons learnt, and new structures developed during the emergency must be leveraged now for routine situations to improve patients’ early access to innovative, quality, and safe medicines globally. 

The session will explore how regulatory reliance benefit patients and how patient partnerships advance the regulatory process into delivering safe and high-quality diagnostics, vaccines, and treatments to patients as fast as possible.

10:30 - 12:15

Re-invigorating ‘patient-state’ partnerships in reorienting universal health coverage through primary healthcare community pharmacies and self-care

Dr Tessa Richards, Associate Editor MRCP, MRCGP, BMJ [Moderator]

Judy Stenmark, Director General, Global Self-Care Federation

Justin Koonin, Co-chair, UHC2030

Raymond Anderson, Past President & Trustee of Commonwealth Pharmacists Association

Agron Bytyqi, Chairman of the Board, Patients’ Rights Association in Kosovo - PRAK

Fatima Seedat, Development Manager, The South African Depression & Anxiety Group (SADAG)

Dr Konstantinos Antypas, Research Manager, SINTEF Digital & Senior Researcher, Norwegian Centre for E-health Research

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When in 2017 the United Nations (UN) declared 12 December as International Universal Health Coverage (UHC) Day, we had high-level commitment made to the UHC vision that all people have access to the full range of quality health services they need, when and where they need them, without financial hardship. 

This commitment was further endorsed by the UN in 2019 at the United Nations High-Level Meeting (UN HLM) “Universal Health Coverage: Moving Together to Build a Healthier World”, where Member States agreed to ensure that by 2030 everyone in their country will receive all the quality health services they need without suffering financial hardship.

Now, post pandemic, the World Health Organization (WHO)’s Executive Board 152 in January 2023 shared a road map for reorienting health systems to primary healthcare (PHC) as a resilient foundation for universal health coverage. This will be presented and endorsed at the High-level Meeting of the United Nations General Assembly on Universal Health Coverage in September 2023.

Self-care is an important part of our health system development, more so after the pandemic and the rise of telehealth and community pharmacy-based support. While we are reorientating health systems towards PHC, we must explore the role of community pharmacies and self-care within primary health care. 

This session will look at the several UN High-Level Political Declarations and WHO Resolutions on UHC and PHC and where we are with them. It will also look at how we can boost self-care and the key role community pharmacists play in making UHC complete.

Networking Lunch

13:30 - 15:00

Opening health economics, HTA and value-based healthcare to patient partnerships

Kawaldip Sehmi, CEO, International Alliance of Patients’ Organizations (IAPO) [Moderator]

Dr Paula Blancarte Jaber, Project Manager - Outcomes Research Team, International Consortium for Health Outcomes Measurement (ICHOM)

Dr Dalia Dawoud, Associate Director (Research), Science, Policy and Research Programme, National Institute for Health and Care Excellence (NICE)

Diego Fernando Gil Cardozo, Executive Director, Colombian Federation of Rare Diseases - FECOER

Orajitt Bumrungskulswat, Board Member, International Alliance of Patients’ Organizations (IAPO) & Assistant Secretary General, Heart to Heart Foundation

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Health is a political choice made in severe economic climates today. The choices to invest in universal health coverage (UHC) are being made within a complex post-COVID competing interests. Which Sustainable Development Goal (SDG2030) do we advance first within the national budgets? 

Over the last decade, there has been an explosion of genomic and digital health technologies available to all and it is now extremely difficult to make the best choice. So how will Member States procure all the innovative evidence-based medicines, services, health devices and other health technologies available to extend their UHC 2030 to cover most of their population, give them more appropriate and effective standard and personalised healthcare services and medicines, and reduce their out-of-pocket contributions? 

This session will look at how we can improve access to innovative medicines through patient engagement and advocacy activity in health technology assessment (HTA) and value-based healthcare (VBHC) approaches.

15:00 - 15:30

Networking Coffee

WHA 76 Non-State Actors Town Hall Meeting

17:30 -17:45

Closing Ceremony

Dr Neda Milevska-Kostova, Chair, International Alliance of Patients’ Organizations (IAPO) & President, IAPO Patients for Patient Safety Observatory

Kawaldip Sehmi, CEO, International Alliance of Patients’ Organizations (IAPO)