< Previous40TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT Finding the common beat Towards a new vision of collaboration to improve access to medicines Organised by WHO Regional Office for Europe, the Norwegian Ministry of Health and Care Services, and the Norwegian Medicines Agency, in collaboration with the European Observatory on Health Systems and Policies Equitable and sustainable access to safe, effective, affordable, and quality assured medicines and health products is critical to Universal Health Coverage (UHC) and achieving the Sustainable Development Goals (SDGs). Despite this goal being shared by the public and private sectors, achieving it has proved difficult. Patients, health systems, and governments expect the right to reasonably priced pharmaceuticals that meet their needs, whilst investors and the pharmaceutical industry expect to earn sufficient profits to compensate for the risk inherent in developing or manufacturing those medicines, explained Natasha Azzopardi-Muscat, Director, Division of Country Health Policies and Systems, WHO Regional Office for Europe. Achieving this elusive goal will require much more unity, transparency, and coherence between the public and private sectors on a number of controversial topics, and sustainability is critical. Challenges of access to medicine A range of obstacles stand in the way of sustainable access to safe, effective, affordable, and quality assured medicines. Rising prices of innovative medicines push these products out of the reach of even the wealthiest of countries. Bjørn-Inge Larsen, Secretary General, Norwegian Ministry of Health and Care Services, gave the example of Norway, which was able to finance just half the drugs it evaluated last year despite being one of the best-financed health systems globally. The audience agreed that this is indeed a problem faced by all countries. On the other end of the spectrum, and as pointed out by Clemens Martin Auer, President, European Health Forum Gastein, previous success in driving down the prices of generic drugs means that certain parts of the generic sector are now so underpriced that manufacturers are not incentivised to produce them. In addition, there remain marked inequities in access to medicines across the WHO-EURO region. This is compounded by fragmentation of purchasing power, which places countries and regions in direct competition with each other, and limited transparency in the process of valuing and buying medicines and health products. Lessons learned from COVID-19 The COVID-19 pandemic has demonstrated that collaboration across sectors and borders is both possible and vital. This is of utmost importance for the realisation of sustainable access to safe, effective, affordable, and quality assured medicines. The crisis has led to the emergence of several worthwhile initiatives of joint procurement for essential medicines, showcasing the benefits of shared purchasing power when countries come together to tackle common challenges. It has brought us together, reminding us that we are indeed all patients, and has catalysed unprecedented levels of innovation in the pharmaceutical industry. Conversely, Marco Greco, President, European Patients’ Forum, pointed out the pandemic has also exposed chronic underinvestment in health and social care, and to some degree a lack of coordination. What are the solutions? • Increasing transparency Improving access to medicines and health products across the WHO-EURO region is a multifactorial problem which requires a 41TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT multisectoral solution. A key aspect of this process is increasing transparency between stakeholders. Auer emphasised the importance of moving away from the “them” and “us” discourse towards real partnerships based on transparency, through fair debate and open acknowledgement of the challenges ahead. The panellists agreed that all stakeholders must be invited to the discussion table, including those traditionally excluded, namely patient groups. • Defining value Innovative medicines and health products are priced according to their value, but how is value defined? Traditionally, value has been seen primarily in monetary terms. However, as Greco highlighted, medicines are not consumer products like any other, and this valuation does not account for their inherent social value. This is particularly true for innovative drugs which treat rare diseases, and thus innovation becomes meaningless when not available for the patients it is meant to benefit. Once we agree upon a definition of value which satisfies all stakeholders, we can reframe the debate and seek agreement on drug pricing. • Ensuring sustainability Sustainability of innovation is key to improving accessibility to safe, effective, affordable, and quality assured medicines. Solutions must therefore emphasise the importance of sustainability in innovation, for both health systems and pharmaceutical companies. The Norwegian example has shown that increased investment in procuring new medicines does not ensure greater sustainability of innovation. In addition, and as Sarah Garner, Acting Programme Manager, Health Products and Pharmaceuticals, WHO Regional Office for Europe, pointed out, it is problematic funding innovation for future patients out of health system budgets meant for patients today, which is the situation currently. A balance must be sought between ensuring creativity and innovation in the pharmaceutical sector with ensuring sustainable access to innovation for patients. • Dancing with elephants Difficult questions remain to be answered. Can we agree that increased transparency is needed? If so, does this translate to improved access? How do we incentivise stakeholders to be more transparent? How do we agree on product prices; are the expected returns on investment viable with more risk sharing? And should health authorities act more as active buyers than passive payers? Next steps: The Oslo Medicines Initiative During the session, Hans Kluge, Regional Director for Europe, World Health Organization, launched the new Oslo Medicines Initiative. The joint initiative, highlighted in the WHO European Programme of Work “United Action for Better Health”, will provide a platform for Member States and stakeholders to collaborate and set out a new vision for better access. A high- level meeting will be held in spring 2022 in Oslo and will seek commitments for joint action to ensure all stakeholders are invited to the dance floor. Learn more Session recording Programme42TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT Science of healthy living Challenging the status quo to enable healthier choices Organised by United European Gastroenterology (UEG) Unhealthy dietary habits, often characterised by the consumption of ultra-processed foods and alcohol, are fueling a growing burden of chronic digestive diseases as well as many other NCDs across Europe. But how much agency do consumers truly have when it comes to making healthier choices on a daily basis? This session, organised by United European Gastroenterology (UEG), discussed the synergies between conditions and risk factors linked to food and alcohol intake, as well as the sizable health impact of commercial practices, and explored the need for public health interventions that can enable systemic change. Synergies are everywhere The economic, individual and social burden of functional digestive disorders (FGIDs) is significant: as described by Markus Peck-Radosavljevic, Chair of the Public Affairs Committee, UEG, FGIDs are heavily associated with educational and occupational absenteeism, and the annual costs to countries of treating and managing the most prevalent FGIDs is often in the billions. While food is associated with symptom onset or exacerbation in a majority of FGID patients, chronic digestive diseases are far from the only conditions affected by dietary habits and alcohol intake. As pointed out by Monique Van Leerdam, gastroenterologist, Netherlands Cancer Institute, recommendations for primary and secondary prevention of cancers have been in place for over 13 years, and we have long known that the main modifiable risk factors for many cancers include excess body weight and alcohol intake. Speakers discussed the practical and scientific value in looking at multiple such risk factors in tandem. As pointed out by Zira Shelba-Zagi, Head of the School of Public Health at the University of Haifa, in real life the attempt of a clear-cut separation between different risk factors and conditions is often as impossible as it is unhelpful. Alcoholic (AFLD) and non- alcoholic fatty liver (NAFLD) disease look similar, have similar pathogenic mechanisms, and data indicate synergies in risk factors and outcomes when exploring both conditions - 50 % of risky drinkers also have at least three risk factors for metabolic syndrome, which is associated with NAFLD. Tackling individual risks and diseases in isolation can lead to a lack of awareness among the general public and physicians that these conditions 43TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT co-occur and risk factors are linked, which ultimately proves detrimental to effective and holistic treatment approaches. To address synergistic problems, it is vital to recongnise links and work together across medical specialties and policy sectors, speakers agreed. Personal agency versus commercial and socioeconomic determinants When it comes to designing policies that will enable healthier choices, we might be placing too much focus on individual habits, and not enough on the systemic factors that influence them. Responding to the question ‘What do you believe is fueling the obesity epidemic?’, 76% of session participants identified the convenience and accessibility of fast food as the biggest factor, and 24% focused on advertising and marketing of unhealthy food, while only 10% named individual choices as the decisive factor. Bente Mikkelsen, Director at the Department of Noncommunicable Diseases, World Health Organization, expanded on this view, adding “How do we protect our populations? There is only so much you can do for [individual] healthy choices and health literacy. It is actually up to the government to protect against most of the very damaging risk factors we know to affect health - being it air pollution, alcohol, tobacco, but also unhealthy food – through regulatory measures.” A particularly insidious branch of advertisement for unhealthy foods targets the youngest and most vulnerable consumers, as highlighted by Emma Calvert, Food Policy Officer, European Consumer Organisation (BEUC). Advertisement to children often relies on the idea that children cannot distinguish between entertainment and marketing, with strategies such as attaching likable cartoon mascots to food products and employing the concept of ‘advergames’. Advergames entail advertising messages integrated into digital games for children, exposing them to marketing messages for far longer periods of time than while viewing a traditional advertisement clip. Exposure to marketing methods like mascots and advergames, combined with the fact that the number of advertisements for highly processed and sugary foods far outweigh marketing efforts for healthier alternatives, create an environment that contributes to 1 in 3 children in the EU being overweight or obese. As argued by Calvert, the EU self-regulatory approach, which includes few to no binding restrictions on many areas of marketing such as food packaging, may not be sufficient to tackle this problem. Harsher regulation may be a road to success: some countries like Chile, who are taking more progressive action in this area - e.g. banning cartoon characters on foods with high sugar content - can boast improved health outcomes. When it comes to socioeconomic determinants of health, there is also a misperception that NCDs are the diseases of the affluent. In reality, most NCD deaths occur in low- or middle- income countries, and inequity regarding access to treatment is significant. Next year marks the 100-year anniversary of the discovery of insulin, but at the moment only 50% of those in need have access to it. While the impact of behavioural risk factors on NCD prevention are undeniable, it is important to recognise that there is a socioeconomic gradient to these risk factors (i.e. unhealthy eating, alcohol intake, smoking), and to address the commercial and socioeconomic influences on a political, regulatory and systemic level. COVID-19 as an X-RAY for broken systems In a sense, COVID-19 and resulting lockdowns have been a perfect storm for NCDs: from food and alcohol consumption rising in housebound Europeans, to the pandemic-associated disruption in treatment and continuity of care for patients already suffering from NCDs in many countries. At the same time, the wake-up call of the crisis presents as an opportunity - it is plain to see that health systems need to be re-designed for a resilient future, and now is the time to advocate for better strategies to prevent, treat and manage NCDs. Speakers and participants in the session agreed that recognising, understanding, and utilising a synergistic approach to risk factors and policies when it comes to healthy lifestyles will be key to improves outcomes. Besides incentivising and penalising individual behavior, there is a clear need to focus on holistic public health approaches and address the role played by commercial determinants and socioeconomic inequities. Along the way, we might have to let go of the idea that industry self-regulation can be a sufficient instrument, and recognise that a stronger public regulatory impact on pricing, labeling and advertising may help to create a healthier environment by making healthy choices visible and affordable. Learn more Session recording Programme44TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT Cancer care, health literacy & COVID-19 Organised by the Health Literacy Coalition (Standing Committee of European Doctors, European Patients Forum, Health Literacy Europe, MSD), funded by MSD The COVID-19 pandemic has called for people to acquire and apply health information at a rapid pace. This has been particularly true for cancer prevention, treatment, and survivorship. Moderated by Vivek Muthu, Director, Marivek Ltd, this session set out to address several questions. Does better health literacy help in this health crisis? How can health literacy be improved? To what extent is Europe’s Beating Cancer Plan an opportunity to focus on health literacy? What is health literacy and why does it matter for cancer patients? Health literacy - a patient’s ability to understand relevant information, to analyse and critically assess it, to apply it to their circumstances, and make a judgment on their own situation – is particularly important in the difficult journey facing cancer patients. Kristine Sørensen, Founder, Global Health Literacy Academy, highlighted that health literacy is often a neglected public health challenge, with more than one third of the European population having difficulties managing information relating to their health. Building on this, Cathryn Gunther, Vice President, MSD, iterated that health literacy is vital to cancer care and evidence-based cancer prevention, treatment, and adherence. In medicines development, new digital biomarkers and treatments are increasingly complex, it is therefore essential that industry takes responsibility for ensuring patient and drug information is embedded with health literacy principles. Furthermore, tools to measure and show progress in health literacy should be systematically applied to medicines development and in populations more generally. Kaisa Immonen, Director of Policy, European Patients’ Forum, saw health literacy as a critical facet of patient empowerment. Not only does it support shared decision making and self- management, but it is also a patient’s right and a critical strategy to redressing inequities in health. Cancer care and COVID-19 Cancer patients are regarded as a highly vulnerable group in the current pandemic due to their immunocompromised status, especially patients over 65 belonging to ethnic minorities. Information-seeking and doctor-patient interactions have changed drastically during COVID-19, limiting face-to-face meetings. Screenings have declined and fewer people are being diagnosed with cancer over the past months, as Gunther highlighted, “People aren’t getting less cancer; diagnoses are being reduced due to the limited access to health systems”. Ole Johan Bakke, Member of the Board, Standing Committee of European Doctors, detailed a first-hand account of a Norwegian patient who was diagnosed with two cancers in 2016. From the cancer and subsequent treatments, the patient developed a variety of severe side effects, and now receives home nursing. In Norway, digital communication is not established between patients and hospital doctors (medical specialists) or with home nurses. This has resulted in a broken care journey, and a broken educational journey for the health literacy of the cancer patient. Digital communication should allow continued care and continued education. On this point Bettina Ryll, Founder, Melanoma Patient Network Europe, reiterated the importance of education and investment in education. Helping patients to read and understand science is a crucial component of health literacy. Referring to it as “knowledge protects”, Ryll highlighted that those patients who understand their disease and treatment options ultimately have better health outcomes. Undoubtedly, in these unprecedented times, the mental Health literacy is more topical than ever!45TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT health of many citizens has suffered, particularly those with chronic diseases. Urška Košir, Researcher, University of Oxford, confirmed that a recent study in the United Kingdom found that over 60% of young cancer patients felt mentally affected by the crisis. Having a compromised immune system, uncertainties regarding treatment, and wondering whether their long-term outcomes had been affected were just some of the reasons attributed to this increase in anxiety. Increasing health literacy will not only assist in reducing the mental burden on patients but indeed the burden on society as a whole. Europe’s Beating Cancer Plan A common thread throughout the discussion was the clear need for health literacy to be reflected in Europe’s Beating Cancer Plan. Addressing concerns, Matthias Schuppe, Project Team Leader for Cancer, DG SANTE, European Commission, stressed the mandate for the plan was a holistic one which intends to tackle the entire disease pathway, from prevention, to early diagnosis, through to follow-up care for cancer patients and survivors. Health literacy is a cross-cutting issue and thus critical to the success of the plan itself. When asked what wish they have for Europe’s Beating Cancer Plan, answers from the panel included: • A definite framework to support health literacy for patients and healthcare systems; • A sentence which encourages Member States to include health literacy as part of their national cancer control plans; • Investment in prevention; • Input from patient organisations, health NGOs, and health literacy experts to shape a concrete health literacy action plan. The way forward In an interactive poll during the session, including health literacy in the core school curricula was voted the action most likely to have the biggest impact on improving health literacy and patient outcomes. Sørensen pointed out that health literacy requires a whole of society approach, where children are taught basic health skills from an early age. Collectively, the panellists agreed that both individuals and healthcare providers bear responsibility for improving health literacy. Where patients are not well placed to learn themselves, responsibility lies with healthcare providers. A definitive, multi-stakeholder health literacy framework and action plan should be developed to achieve this and to meet citizens where they are. The pandemic has unveiled that, along with system preparedness, individual preparedness is key for solving complex real-life problems. Health literacy concerns us all – physicians, nurses, patients, relatives, citizens, and governments - and a collaborative dialogue around the topic is critical to understanding the priorities and needs of each partner. Europe’s Beating Cancer Plan provides an opportunity to do just this. Learn more Programme Session recording46TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT Tackling access inequalities in cancer care Organised by the Central European Cooperative Oncology Group (CECOG) supported by MSD With the expected unveiling of Europe’s Beating Cancer Plan in December 2020, the European oncology community is placing high hopes in the European Union’s ability to harmonise and improve national cancer control initiatives and drive better patient outcomes. The cancer lottery: a brutal reality for European citizens Cancer mortality varies widely across Europe, and survival depends on where you live. In particular, the inequality gap between countries in Central and Eastern Europe (CEE) and Western Europe (WE) is striking. Depending on the type of cancer, data shows that survival rates in WE are 40% higher than in CEE countries where mortality rates for many cancers are above the European average (Lawler, Banks, Law, et al., 2016). The COVID-19 pandemic has served as a magnifying glass on existing disparities, and the economic disruption it has caused threatens to deepen them even further. Setting the scene, Antonella Cardone, Director, European Cancer Patient Coalition, highlighted the serious East-West divide and acknowledged inequalities range from prevention to survival. “Significant differences can be observed in diagnosis, screening, access to affordable care, access to medicines, access to trials, survivorship care, or even with the principle of the right to be forgotten”. Indicating that a patient’s access to treatment is highly varied depending on where they live, Cardone told of one particular drug used to treat breast cancer which became available to patients in Finland immediately after approval by the European Medicines Agency (EMA), five years later it was available for use in Denmark, after eight years it was introduced in Romania, but patients in Latvia had to wait thirteen years for this potentially life-saving treatment. These Bridging the gap with Europe’s Beating Cancer Plan47TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT delays in access to innovations pose a major challenge in bettering patient outcomes. Bridging the gap with better data: what gets measured gets done Only half of the EU population is covered by Cancer Registries. This leads to fragmentation in cancer data across Europe, making it difficult to implement an evidence-based European Cancer Plan. In this context, Cristian Silviu Bușoi, MEP, European Parliament, welcomed the Governmental International Affairs (GOIA) project and the Cancer Dashboard initiative led by Christoph Zielinski, President, Central European Cooperative Oncology Group, aimed at improving cancer control in CEE. “Cancer information is an important tool to help reduce the risk of cancer and to improve outcomes for people diagnosed with cancer”, he explained. Presenting the rationale for developing cancer dashboards, Zielinski noted that despite the scientific achievements in cancer research over the past number of years, there still exists a series of cancer-related issues to be ameliorated in the CEE region, including: cancer incidence rates, primary prevention, patient care, allocated technological and human resources, the availability, access to, and reimbursement of molecular testing, and poor survival and high cancer-driven mortality. Cancer dashboards can serve as a tool to effectively scrutinise cancer care performance, identify ways to improve cancer services, use local data to drive policy change, and assess progress over time. The CEE cancer dashboards will provide an opportunity to focus on CEE in the Europe’s Beating Cancer Plan framework . As Cardone highlighted, “It is very important that Europe’s Beating Cancer Plan will consider the GOIA cancer dashboard as a magnifying glass because what gets measured gets done!”. Reinforcing that the goal of the GOIA project is to fight inequalities and ensure equitable access and quality of cancer care in WE and CEE, Deepak Khanna, President, Oncology EMEAC, MSD, noted that cancer dashboards will provide policymakers with a roadmap to improve access to cancer care. They will help organise, deliver, and measure care that can benefit patients and help address the burden of the disease, as well as measuring progress and recognising gaps. “Cancer planning is crucial to ensure access to quality treatments”, he emphasised. Inordinate amounts of progress have been made in cancer care, but there is no benefit if patients cannot access said innovation. Giving the example of skin cancer patients, Khanna noted that ten years ago the five-year survival rate was just 5%, whereas today that rate has increased to 50%. This is remarkable innovation, but we can only benefit from it by developing plans with a vision to improve the lives of patients. Panellists unanimously agreed that collaboration and multi- stakeholder partnership will be key to the development and implementation of meaningful cancer dashboards. Khanna stressed that the success of the initiative will depend on the commitment to implement. Results will not be seen overnight and there is a risk of failure without multi-stakeholder commitment and if progress is not effectively measured, but as Cardone iterated, now is the right time to leverage the European momentum and ensure that these tools are informing policy change in the region. Cancer literacy in focus Data will be critical to drive policy change in CEE, but we must ensure that the evidence is accessible and understandable. Cancer literacy poses a unique set of challenges when compared to other types of health literacy, as patient decisions regarding screening, treatment, and side effect management are often complex, and timely decision-making is more critical. Panellists stressed the importance of empowering citizens and patients by addressing health literacy, self-management, and shared decision-making, which should be at the core of Europe’s Beating Cancer Plan. The session concluded with a call to action urging the cancer community to continue with their hands-on efforts to improve cancer outcomes in Europe with a particular focus on bridging the gap between CEE and WE. Learn more Session recording Programme48TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT Health democracy in action Organised by WHO Regional Office for Europe in collaboration with WHO headquarters A call for a paradigm shift towards participation “Health is a channel that can allow us to strengthen democracy going forward,” stated Natasha Azzopardi-Muscat, Director, Division of Country Health Policies and Systems, WHO Regional Office for Europe, in her opening remarks to this session on participatory approaches to shape health decisions. Linking the session theme to the WHO´s Thirteenth General Programme of Work 2019−2023, she discussed how it was of paramount importance to establish appropriate mechanisms and channels to work with civil society to ensure health services are being designed and owned by people and reflect their needs, aspirations and desires. “Only in this way will we be able to advance health by bringing people on board and along with us,” she stated. Going beyond the narrow cast Dheepa Rajan, Health Systems Advisor, Department for Health Systems Governance and Financing, World Health Organization, drew on three recent articles in scientific journals to argue that participation of civil society in government decision-making was limited during the COVID-19 pandemic. She observed that in a fast-moving crisis such as the COVID-19 pandemic, civil society is often excluded from expert committees, and loses out on the chance to give their input into mitigation strategies and thereby reduce morbidity and mortality. During 2020, participatory input could have helped to mitigate some of the predictable adverse effects of the COVID-19 crisis and could have reduced anxiety and helplessness. She also critically reflected on what counts as evidence, stressing that evidence is understood as scientific evidence, which leaves out experience-based evidence from the field. However, there were also differences within the field of experts with regard to who was first involved in the response: at first mainly virologists and epidemiologists were consulted, it was only later in the pandemic that public health experts, social scientists and social workers were included in decision- making. Meanwhile civil society acted independently of the government response. Rajan´s input can be summarised as a strong argument for participation and the inclusion of as many perspectives as possible to make the best possible decisions in uncertain times. Participation during a crisis is only possible if structures already exist The country panel with representatives from Thailand, France and Portugal showcased national initiatives, as well as the perspective of civil society organisations. Nanoot Mathurapote, Amplifying people’s voice in health decision-making49TRACK IV - EMPOWERMENT AND AGENCYEHFG 2020 CONFERENCE REPORT Head of Global Collaboration Unit, National Health Commission Office, Thailand introduced the Thai strategy of “a triangle that can move mountains”. The dialogue of science (knowledge generation from academia), political involvement (authority from government) and social power (from civil society, NGOs and the private sector) can make a change. This tri-partite synergy developed over many years has been used to reform the health system and more recently tackle challenges like COVID-19. Mathurapote provided examples from both rural and urban contexts of communities in Thailand pulling together and developing novel solutions to provide food for those in quarantine. “Local communities need to be engaged in decision-making from the outset,” she emphasised. Representing France, Jean-Francois Delfraissy, President, Scientific Advisory Council for Covid-19, France and Yvanie Caille, Founder of the patient organisation Renaloo, reported on their experiences during the crisis. Although citizen consultation in France is quite well established, during the COVID-19 crisis there was a step backwards and central government and the medical community appeared to exclude civil society from the consultation and policymaking process on the COVID-19 response. Caille illustrated the lack of civil society consultation during the crisis by providing some eye-opening case studies of the experience of patients with kidney disease. “The epidemic has become an alibi for abuse of medical power”, she stated. “Health democracy has been shattered – overnight we were no longer asked for our opinions - it was as if we no longer existed”. At the end of his intervention however, Delfraissy pointed to what is hopefully a sea-change in approach in France, describing some promising examples at city levels (Bordeaux, Lyon and Strasbourg) of citizen involvement in decision-making committees. Similar experiences from Portugal were reported by Henrique Barros, President, National Health Council, Portugal and Ricardo Fernandes, Director, Grupo de Ativistos em Tratamentos (GAT), Portugal. Barros described how the Portuguese government response was very hierarchical – a clear expert-centred traditional role - based on the idea that a technical response is sufficient and leaving little room for community participation. “We still need this transformation – that the community are not just recipients of healthcare but part of the solution,” Barros asserted. Ricardo Fernandes, representing a patient organisation for people living with HIV, Hepatitis and Tuberculosis, discussed the vulnerabilities of the people he worked with and how the social precariousness created by the economic crisis has heavily affected them. In his opinion the Portuguese government has been simply overwhelmed by COVID-19, as pre-existing effective informal communications channels broke down during the crisis. The pandemic also interfered with the implementation into law of a formal participation strategy that had been developed after years of advocacy. Ensuring formal channels of communication exist and there is transparency in how decision-making is conducted is key, Fernandes stressed. Establishing participatory structures is not a luxury investment “More voice in decision-making is not a luxury – it is at the root of a collective process and at the root of governance,” said Agnes Soucat, Director, Department for Health Systems Governance and Financing, World Health Organization in her closing remarks. She reflected on how the pandemic has painfully exposed those areas where we have invested too little in the core common goods for health and highlighted the importance of collective action and trust. Their commitment to universal healthcare means that all countries must build strong and participatory multi-stakeholder processes that bring about collective decision-making. She reflected on the case studies from the country panel, which had shown how institution building, developing ongoing dialogues and ensuring inclusivity through using different models and processes was key – and above all that mechanisms need to be institutionalised and regularised. Soucat underlined how important it was to embed these participatory processes in health system governance, allocating the resources within national health budgets. “Regular interactions between government and the public build understanding and trust which can bear fruit during crisis time,” she advocated, imploring governments to realise that the participatory dialogue will bring about more advantages than the potential risks of holding difficult conversations. Highlighting its importance in terms of overcoming COVID-19 and setting us on a positive trajectory to meet the SDGs, she concluded: “We need to move beyond fragmented interventions to invest in institutional processes, get the governance right and not have social participation as an afterthought!”. Learn more Session recording ProgrammeNext >