Co-creating a healthier Europe: a European Health Union for and with civil society

Eurohealth  —  Vol.27  |  No.2  |  2021 7Plenary CO-CREATING A HEALTHIER EUROPE: A EUROPEAN HEALTH UNION FOR AND WITH CIVIL SOCIETY A civil society perspective By: Milka Sokolović and Paul Belcher Summary: We are in a time of huge turbulence with not one, but  a wicked combination of health, environmental and social crises.  Unfortunately, these interconnected challenges affect most the most  vulnerable among us. We know that many a solution lays in wider civil  society, deep in communities, fuelled by compassion and intrinsically  motivated. But is the European Union engaging effectively with civil  society as it moves towards recovery from the largest health crisis in  its history? Fears are that while health civil society is sometimes on  the EU policy menu, it is rarely at the table, insufficiently consulted,  and inadequately financially supported. Keywords: European Health Union, Public Health, Civil Society, Democracy, COVID-19 Milka Sokolovic´ is Director  General of the European Public  Health Alliance, Brussels, Belgium;  Paul Belcher is Special Advisor to  the European Public Health Alliance  and a member of the Advisory  Committee of Experts of the  European Health Forum (Gastein).  Email: milka.sokolovic@epha.org Pandemic: Civil society to the front The COVID-19 pandemic highlighted the essential role of civil society and community led organisations. It unleashed a huge energy and revealed the power of ordinary people in their ordinary neighbourhoods. Health and social workers, civil society actors and local service providers (food, transport etc.) were at the forefront of the pandemic, filling gaps in national provision and pandemic responses. Often, civil society organisations were the only entities able to provide support and mitigate the impact of lockdown measures. Yet, there was – and still is – chronic underfunding of such services, which threatens their sustainability in the recovery ahead. This must change. All this is taking place against the background of not one, but a combination of health, environmental and social crises. 1 Health is threatened by the COVID-19 pandemic, and health systems are facing relentless pressure. Economies are in turmoil, human rights are increasingly challenged and democracy and trust are declining, pushed, among others, by a growing misrepresentation of science. Not least, the planet is in peril due to the climate crisis. > #EHFG2021 – PLENARY 2: Co-creating a healthier Europe: More health responsibilities or business as usual? Eurohealth  —  Vol.27  |  No.2  |  2021 8 Plenary These interconnected challenges are most affecting the most vulnerable in our societies. 2 The COVID monster has fed off social and economic determinants of health and exacerbated existing health inequalities. It has revealed the toxic relationship between communicable and non-communicable diseases, with so many COVID-19 deaths linked to underlying and pre-existing health conditions. In some quarters at least, civil society’s vital contribution to dealing with the pandemic and wider crises is being recognised and we have a window of opportunity to anchor this recognition and embed these positive developments into health policy and practice at the European Union (EU) level. ‘‘ civil society voices are more crucial than ever for COVID-19 recovery The pandemic has demonstrated the need for “all-of-society approaches that incorporate civil society and communities”, said the World Health Organization’s Director-General, Dr Tedros Ghebreyesus, this year at the launch of the Geneva based agency’s “engagement transformation” process with civil society. 3 At WHO European headquarters, Dr Hans Kluge has launched the “Breakthrough WHO initiative” to engage and empower European civil society organisations in health emergency responses. 4 National leaders across the globe have also acknowledged that civil society voices are more crucial than ever for COVID-19 recovery. The 15th ministerial conference of the United Nations Conference on Trade and Development (UNCTAD) emphasised that “Now more than ever, civil society groups should define what the recovery from the coronavirus should look like and who it should serve”. 5 In Brussels too, the EU’s Economic and Social Committee recently concluded that “the COVID-19 pandemic has taught us one fundamental lesson: We need and are reliant on a well-functioning civil society. A civil society that can innovate, take ownership and drive community resilience”. 6 EU Health Union There is, however, a growing concern among health civil society that we are losing the momentum and sliding back to old ways and ‘business as usual’ in the one area where you might least expect it: the creation of the new ‘EU Health Union’. Despite the soundbites such as ‘nobody left outside’ and ‘Europe for citizens’, there is growing unease that ‘low level’ citizens are being side-lined and deprived of real participation in ‘high level’ policymaking. Recent examples include the creation of the new European Health Emergency Preparedness Authority (HERA) without civil society at the table and the withdrawal of operational funding for EU health NGOs from the EU4Health programme. 7 EU4Health funding: Civil society in peril? This year, the European Commission’s Directorate-General for Health and Food Safety (DG SANTE) launched its 2021 – 2027 EU4Health Programme, with the largest budget ever signalling the importance of health policy as an EU priority at the height of the pandemic. A timely moment – amid pandemic and other global crises – to defend and reinforce support for EU health civil society? Not quite. An extraordinary and unilateral decision, and one not mirrored by other Commissions DG’s, was taken to cut vital Operating Grant funding for European health NGOs in the 2021 – 2022 EU4Health Annual Work Programme. This is despite the fact that the EU4Health Programme budget is vast, 11 times larger than the previous, and the cost of Operating Grants for civil society – if kept at the same level as in the previous programme – would be a mere tenth of a percent of the total. Since the EU formally began activities in public health in 1993 (Article 129, Treaty of Maastricht), Operating Grants have been a lifeline to ensure an independent and thriving European health civil society. This has allowed them to be active partners in delivering effective EU public health priorities and programmes. Indeed, the Commission’s own evaluation of the third EU Health Programme (2014 – 2020) recognised the value and contribution of civil society. 8 Moreover, health NGOs have played a key role in European policy discussions, providing independent citizen and patient voices. Independence is critically important to ensure that EU policy discussions do not become an echo © Floris Oudshoorn of Comic House / EHFG 2021 Eurohealth  —  Vol.27  |  No.2  |  2021 9Plenary chamber just for those that can afford to have a voice – such as groups reliant on industry funding, which sometimes is the only viable alternative. Effective co-creation of EU policies relies on having civil society at the table, not just on the policy menu, as Robert Madelin, former EU Director-General for Health, has stated: “Society needs everyone around the Health Table. Some voices need taxpayer support to get there and have things to share. Operating grants can come with Key Performance Indicators, but they are not optional. They are essential for effective co-creation of policy.”  9 However, DG SANTE had a surprise plan in its 2021 work programme – to replace Operating Grants with short term, project specific ‘Action Grants’, narrow in their objectives, and with no capacity to sustain the versatile wide-ranging activities of EU health civil society. Moreover, out of the 16 Action Grants in the first call (calls suitable for NGOs), 11 focused on cancer alone – leaving out other health areas and wider priorities such as reducing inequalities and health inequity in Europe. ‘‘ Effective co-creation relies on having civil society at the table What makes the decision by DG SANTE to defund health civil society more perplexing is that it was taken on the watch of a European Commissioner for Health who is widely known and praised for her impressive work and support for health civil society. As Commissioner Kyriakides acknowledged last year, “I was President of an NGO myself so I know how important the input of civil society is to the legislative process”. 10 Whether there was a breakdown of communication within European Commission structures, or whether this is a symptom of a drift away from supporting civil society is unclear. It was only under a massive and persistent pressure of European health NGOs supported by 56 MEPs and several Member States that on 25 October 2021 a political decision was taken to reinstall the Operating Grants in the EU4Health work programme for 2022. As always, the devil will be in the detail, and the impact on civil society will depend on the eligibility criteria, scope, budget, and timing of this grant programme. 11 By the time of submission of this article, all of this remains unclear, leaving the NGOs in deep existential uncertainty. Moreover, there are further worrying signals that civil society is not a top priority. HERA: No Hero for civil society? On 16 September 2021, Commission President Ursula von der Leyen announced the creation of the European Health Emergency Preparedness Authority (HERA), one of the key deliverables of the European Health Union package that she undertook to deliver during her State of the Union address last year. HERA has the potential to fill a major structural gap in the EU’s crisis preparedness and response infrastructure by increasing Europe’s preparedness and resilience in future health crises, focusing on development and production capacities, on stockpiling of vaccines, therapeutics and diagnostics, and on their deployment mechanisms. The European Public Health Alliance – and health civil society more widely – has welcomed the creation of HERA as a step in the right direction to increase the chances of Europe being better prepared for future health crises. HERA comes with substantial priority setting power, with a large budget and with strong connections with industry. However, by November 2021 when this article is being written, HERA proposal does not foresee any civil society engagement. A joint statement by the European Public Health Alliance and European Patients Forum has stressed that the European Commission must listen to the voice of citizens and patients and guarantee that ‘decisions about them are not taken without them’. 12 There should be more to EU public health than medicines and emergency preparedness. Many disciplines and expertise are required to plan for future health crises, as a recent study of COVID-19 government advisory boards in five European countries demonstrated. 13 Behavioural, political, social and economic sciences add value to more medical approaches, and community-based and civil society groups connected to grassroots levels can help reach marginalised communities, which have often been left outside national responses to the pandemic. ‘Build back better’ requires an all discipline all society approach. Worrying then, that at the launch discussion of HERA at the 2021 European Health Forum (Gastein) on 29th September – with the formal launch of HERA just two days away – it was seen to be “Still too early to discuss NGO involvement”. 14 Conference on the Future of Europe: a more meaningful discussion is needed So, with health civil society not at the HERA table in Brussels, should we be looking to the current Conference on the Future of Europe which, at the time of writing, is convening in Strasbourg? It was trumpeted as an opportunity for citizens to put forward and debate ideas via online participation and thematic ‘Citizens Panels’ on topics including health and social policies. Yet, coming from those sectors ourselves and speaking to colleagues across the Brussels NGO environment we detect no meaningful, structural involvement of the EU civil society. This despite EU civil society lobbying and putting forward detailed EU proposals for decades. 15 There have been calls for more regular mechanisms to be found to connect with civil society, to replace ad hoc Conventions every decade or so that tend to trawl random ideas. The Conference on the Future of Europe seems all we have, maybe civil society should be playing on the grounds that it Eurohealth  —  Vol.27  |  No.2  |  2021 10 Plenary is better to “use it” than “lose it”? But make no mistake, the Conference is no substitute for meaningful, structured, and permanent engagement with an organised civil society that has invested considerable effort and expertise in working with the European institutions. ‘‘ “Build back better” requires an all discipline all society approach Healthily ever after As this article moves towards publication in 2022, we learn that EU structural funding for European health civil society organisations is being reinstated to a degree, with a budget for operating grants larger than any before. The budget size is not exactly in line with the 11-fold higher overall budget for the EU4Health programme, but the breadth and number of action grants, some specifically earmarked for civil society, do have the potential to make up for some of the difference. There are catches, however, that were to be expected. While some of the changes to the funding eligibility criteria may make civil society’s access to these funds easier, others, like the fact that there is still no multiannual programme, keep health NGOs on the edges of their seats at the end of each financial year, with their long-term sustainability still at stake. In other recent news, it also seems that a seat at an HERA table might also be in sight – not at the grand table managing the authority, but at least at some form of consultative table where views can hopefully be heard. The tale of EU4Health and HERA is, so far, not yet proving to be the bright ‘healthily ever after’ ending for civil society that public health and citizens would wish for. The often quoted ‘Europe for citizens’ could still do better. 16 References 1   Kickbusch I. Visioning the future of  health promotion. Global Health Promotion.  11 September 2021. Available at: https://doi. org/10.1177/17579759211035705 2   Suleman M, Sonthalia S, Webb C, et al. Unequal pandemic, fairer recovery – The COVID-19 impact inquiry report. London: Health Foundation, July 2021.  Available at: https://www.health.org.uk/publications/ reports/unequal-pandemic-fairer-recovery 3   WHO. WHO Director-General’s opening remarks at the CSO – DG dialogue on social participation and accountability. Geneva: WHO, 25 August 2021.  Available at: https://www.who.int/director-general/ speeches/detail/who-director-general-s-opening- remarks-at-the-cso-dg-dialogue-on-social- participation-and-accountability 4   WHO Europe. Breakthrough WHO initiative launched in Europe to engage and empower civil society organizations in health emergency responses.  Copenhagen: WHO Europe, 16 June 2021. Available  at: https://www.euro.who.int/en/health-topics/ health-emergencies/pages/news/news/2021/06/ breakthrough-who-initiative-launched-in-europe-to- engage-and-empower-civil-society-organizations-in- health-emergency-responses 5   UNCTAD. COVID-19 recovery: Civil society voices more crucial than ever. Geneva: UNCTAD,  27 September 2021. Available at: https://unctad.org/ news/covid-19-recovery-civil-society-voices-more- crucial-ever 6   European Economic and Social Committee.  The response of civil society organisations to face the COVID-19 pandemic and the consequent restrictive measures adopted in Europe. Brussels: EESC,  12 January 2021. Available at: https://www.eesc. europa.eu/sites/default/files/files/qe-02-21-011- en-n.pdf 7   Sokolovic´ M, Zeegers Paget D. Sustainable  financing of European non-governmental  organizations (NGOs). European Journal of Public Health 2021;31(6):1113 – 4. Available at: https://doi. org/10.1093/eurpub/ckab121 8   European Commission. Mid-term evaluation of the 3rd Health Programme 2014 – 2020. Brussels:  European Commission, 11 October 2017.  Available at: https://ec.europa.eu/health/funding/ programme/2014-2020/midterm_evaluation_en 9   Twitter. Robert Madelin. 19 October 2021.  Available at: https://twitter.com/eurohumph/ status/1450429402551136259?s=20 10   European Commission. Speech by Commissioner Kyriakides to the European Public Health Alliance General Assembly 2020. Brussels:  European Commission, 3 December 2020.  Available at: https://ec.europa.eu/commission/ commissioners/2019-2024/kyriakides/ announcements/speech-commissioner-kyriakides- european-public-health-alliance-general- assembly-2020_en 11   Euractiv. EU’s Kyriakides promises to reinstate grants for health NGOs in EU4Health programme.  Brussels: Euractiv, 27 October 2021. Available  at: https://www.euractiv.com/section/health- consumers/news/eus-kyriakides-promises-to- reinstate-grants-for-health-ngos-in-eu4health- programme/ 12   European Patients Forum and European Public  Health Alliance. HERA should serve patients and promote public health A shared vision for the EU’s new Authority. Brussels: EPF and EPHA, 2021. Available  at: https://epha.org/wp-content/uploads/2021/09/ joint-epf-epha-statement-on-hera-0921.pdf 13   Colman E, Wanat M, Goossens H, et al. Following  the science? Views from scientists on government  advisory boards during the COVID-19 pandemic: a  qualitative interview study in five European countries.  BMJ Global Health 2021;6:e006928. Available at:  https://gh.bmj.com/content/6/9/e006928 14   European Health Forum Gastein (EHFG). The future of health threats preparedness. Gastein: EHFG,  2021. Available at: https://www.ehfg.org/conference/ programme/sessions/the-future-of-health-threats- preparedness 15   Politico. Hijack the Conference on the Future of Europe! Brussels: Politico, 7 May 2021. Available at:  https://www.politico.eu/article/conference-on-the- future-of-europe-citizens-ideas-online-participation/ 16   Sokolovic´ M. Healthily ever after? Brussels:  European Public Health Alliance, 1 October 2021.  Available at: https://epha.org/healthily-ever-after/