D1.2 – Lessons learned and best practices COVID-19 response: Health Emergency Response in Interconnected Systems

This report on COVID-19 Crisis Governance is Deliverable 1.2 ‘Lessons learned and best practices’ of the project HERoS - Health Emergency Response in Interconnected Systems. It builds on HERoS’ Deliverable 1.1 ‘Recommendations for governance and policies in the COVID-2019 response’. This Deliverable contains three parts. Part A drives on extensive qualitative research in three European countries (the Netherlands, Finland, and Ireland). Part B presents best governance practices and challenges in cross-border medical supply chain. It takes lessons learned from the EU joint procurement and the COVAX initiative for the purchase and distribution of COVID-19 vaccines. Part C reflects on the social network Municipio Solidale in Rome the charity work in the years of the COVID-19 pandemic. Part D provides the best practices from deployment of UK-MED and PCPM’s Emergency Medical Teams (EMTs). Part A presents collected evidence and share best practices and lessons learned related to the governance of the COVID-19 crisis within nursing homes and secondary schools in Europe. Using a whole-of-society approach which we presented in Deliverable 1.1, we looked at three analytical layers: (1) the state and the institutional landscape, (2) established and emerging response organizations and networks, (3) societal resilience and participation. We conducted in-depth interviews, observations, and focus group discussions, and in the Netherlands, we additionally made use of a participatory action research approach wherein we used visual ethnography, photovoice, video diary and arts-based engagement research. Regarding nursing homes, three main themes emerged from our data. First, we found high levels of trauma among nursing home workers and supporting organisations. Therefore, on-site group therapy is the envisioned response needed. Second, we found a major workforce outflow of the sector. This could be mitigated by a structural wage development that is in line with the value of performing essential work duties and would additionally heighten the attractiveness of the nursing profession. Third, due to lack of governmental and public appreciation we have found diminished levels of professional pride, which could be addressed with aligning nursing home working conditions with national hospital standards. In conclusion, we warn about the possible uprising of a European social care crisis which could be mediated by rapid policy-level action in line with our findings. For secondary schools, we also derived three main themes from our data. First, we argue that there is a need in European countries for leadership that facilitates action towards the well-being of our young populations. Experts stressed the importance of strengthening adolescents’ lobbies and advocacy groups in decision making processes. Second, there is an urgent need for funding into tackling COVID-19 associated increases in inequalities among adolescents. Extra time and attention should be allocated to adolescents who have fallen behind with their studies during the past two years. Lastly, we discovered many adolescent accounts of depressive and anxiety symptoms and we emphasise the urgency of closing Europe’s biggest treatment gap within mental health services for youth by reducing waiting times. There is no doubt that the COVID-19 pandemic has caused long-lasting, and in some cases even life-long difficulties to young people. In conclusion, nursing homes and secondary schools are dealing with different vulnerable groups, risks, and priorities and hence, this fuelled variations in crisis response. General measures (e.g. school closures/visitor ban) should be decided upon by central authorities supported by proper coordination mechanisms, while more specific guidelines that depend on the individual attributes of the field needs to be decentralized and bottom-up. Deepening citizens’ participation into the crisis response gives them ownership and control to influence public decision-making that affects their lives. Part B presents the desk review on the European Union’s joint procurement for personal protective equipment, ventilators, laboratory equipment, therapeutic remdesivir and ICU medicines and vaccines, and the COVAX Facility for equitable access to COVID-19 vaccines. Since the COVID-19 pandemic has changed how we govern global medical supply chains unprecedented joint procurement and collaboration initiatives have been set up during the pandemic. In this part we refelct on such cross-border governance mechanisms of joint procurement initiatives in medical supply chains. It examines challenges and best practises by collaborative initiatives from both the EU and the COVAX’ COVID-19 vaccine procurement and distribution. Both comprise innovative cross-border collaborative mechanisms for vaccine procurement and distribution, yet differ across membership, geographic scale, policies, and organizational governance arrangements. They were both values-driven initiatives, inspired by calls for solidarity, but also stemming from necessity. The EU’s procurement for innovation mechanism required the adoption of novel practices in contract development and management, plus new governing institutions (first RescEU, now also HERA). This Part 2 shows how the EU faced unique challenges with one of their co-funded vaccine developers that resulted in disputes over delivery volumes and schedules. However, the joint purchasing of COVID-19 vaccines using Advance Purchase Agreements with vaccine manufacturers through funds under the European Commission´s Emergency Support instrument has been an innovative cross-border governance initiative that could inspire similar collaboration in other domains (e.g., energy). It comprised a centralised or ‘centre-out’ governance arrangement co-ordinated by the European Commission with formal rules within a fragmented bureaucracy, pursuing legal and political alignment among member states of a tightly connected union. It is characterised by broad regional scope, being far more ambitious than earlier EU procurement strategies. Part C is a presentation of the case Municipio Solidale, a local solidarity project in Rome that started at the beginning of the pandemic in March 2020 and lasted until the end of July 2020. The case is about the distribution of food in a municipality in Rome by spontaneous volunteers and social networks. The case presents the challenges the social network had to overcome. The fact that most of the planned activities are still ongoing in 2020 and are permanently included in the territorial offers, shows not only how urgent these measures were in the most difficult period of the pandemic crisis, but above all how necessary they were in general. The response of the territorial community itself, the degree of mobilization and passion that characterized all the activities of the project, as well as the welcome of citizens tell us that Municipio Solidale has managed to respond to a complex request already present in the VIII Municipality, which are further amplified by the COVID-19 pandemic: a demand for primary goods and relational goods among the most vulnerable. The case shows that local initiatives will last and grew into stable charity mechanisms and have the potential to become part of whole of society governance mechanisms. Part D describes PCPM part in EMTs that were one of few emergency response mechanisms that were of relevance in the COVID-19 pandemic. The teams of highly specialized medical staff, with considerable international experience and working under the auspices of the WHO, could have and in many instances were, a very meaningful support to the developing countries facing the worst brunt of the pandemics, coupled with shortages of skills, experienced personnel and equipment. This part summarizes main operational difficulties faced by UK-Med and Polish PCPM’s Emergency Medical Teams, stemming from 25 and 7 COVID-19 deployments respectively. In particular it discusses the changing role of EMTs, as well as challenges faced in meeting high expectations of the respective ministries of health

Pediatric Moyamoya Disease and Syndrome in Italy: A Multicenter Cohort

none54noBackgroundMoyamoya is a rare progressive cerebral arteriopathy, occurring as an isolated phenomenon (moyamoya disease, MMD) or associated with other conditions (moyamoya syndrome, MMS), responsible for 6-10% of all childhood strokes and transient ischemic attacks (TIAs). MethodsWe conducted a retrospective multicenter study on pediatric-onset MMD/MMS in Italy in order to characterize disease presentation, course, management, neuroradiology, and outcome in a European country. ResultsA total of 65 patients (34/65 women) with MMD (27/65) or MMS (38/65) were included. About 18% (12/65) of patients were asymptomatic and diagnosed incidentally during investigations performed for an underlying condition (incMMS), whereas 82% (53/65) of patients with MMD or MMS were diagnosed due to the presence of neurological symptoms (symptMMD/MMS). Of these latter, before diagnosis, 66% (43/65) of patients suffered from cerebrovascular events with or without other manifestations (ischemic stroke 42%, 27/65; TIA 32%, 21/65; and no hemorrhagic strokes), 18% (12/65) of them reported headache (in 4/12 headache was not associated with any other manifestation), and 26% (17/65) of them experienced multiple phenotypes (>= 2 among: stroke/TIA/seizures/headache/others). Neuroradiology disclosed >= 1 ischemic lesion in 67% (39/58) of patients and posterior circulation involvement in 51% (30/58) of them. About 73% (47/64) of patients underwent surgery, and 69% (45/65) of them received aspirin, but after diagnosis, further stroke events occurred in 20% (12/61) of them, including operated patients (11%, 5/47). Between symptom onset and last follow-up, the overall patient/year incidence of stroke was 10.26% (IC 95% 7.58-13.88%). At last follow-up (median 4 years after diagnosis, range 0.5-15), 43% (26/61) of patients had motor deficits, 31% (19/61) of them had intellectual disability, 13% (8/61) of them had epilepsy, 11% (7/61) of them had behavioral problems, and 25% (13/52) of them had mRS > 2. The proportion of final mRS > 2 was significantly higher in patients with symptMMD/MMS than in patients with incMMS (p = 0.021). Onset age <4 years and stroke before diagnosis were significantly associated with increased risk of intellectual disability (p = 0.0010 and p = 0.0071, respectively) and mRS > 2 at follow-up (p = 0.0106 and p = 0.0009, respectively). ConclusionsMoyamoya is a severe condition that may affect young children and frequently cause cerebrovascular events throughout the disease course, but may also manifest with multiple and non-cerebrovascular clinical phenotypes including headache (isolated or associated with other manifestations), seizures, and movement disorder. Younger onset age and stroke before diagnosis may associate with increased risk of worse outcome (final mRS > 2).openPo', Chiara; Nosadini, Margherita; Zedde, Marialuisa; Pascarella, Rosario; Mirone, Giuseppe; Cicala, Domenico; Rosati, Anna; Cosi, Alessandra; Toldo, Irene; Colombatti, Raffaella; Martelli, Paola; Iodice, Alessandro; Accorsi, Patrizia; Giordano, Lucio; Savasta, Salvatore; Foiadelli, Thomas; Sanfilippo, Giuseppina; Lafe, Elvis; Thyrion, Federico Zappoli; Polonara, Gabriele; Campa, Serena; Raviglione, Federico; Scelsa, Barbara; Bova, Stefania Maria; Greco, Filippo; Cordelli, Duccio Maria; Cirillo, Luigi; Toni, Francesco; Baro, Valentina; Causin, Francesco; Frigo, Anna Chiara; Suppiej, Agnese; Sainati, Laura; Azzolina, Danila; Agostini, Manuela; Cesaroni, Elisabetta; De Carlo, Luigi; Di Rosa, Gabriella; Esposito, Giacomo; Grazian, Luisa; Morini, Giovanna; Nicita, Francesco; Operto, Francesca Felicia; Pruna, Dario; Ragazzi, Paola; Rollo, Massimo; Spalice, Alberto; Striano, Pasquale; Skabar, Aldo; Lanterna, Luigi Alberto; Carai, Andrea; Marras, Carlo Efisio; Manara, Renzo; Sartori, StefanoPo', Chiara; Nosadini, Margherita; Zedde, Marialuisa; Pascarella, Rosario; Mirone, Giuseppe; Cicala, Domenico; Rosati, Anna; Cosi, Alessandra; Toldo, Irene; Colombatti, Raffaella; Martelli, Paola; Iodice, Alessandro; Accorsi, Patrizia; Giordano, Lucio; Savasta, Salvatore; Foiadelli, Thomas; Sanfilippo, Giuseppina; Lafe, Elvis; Thyrion, Federico Zappoli; Polonara, Gabriele; Campa, Serena; Raviglione, Federico; Scelsa, Barbara; Bova, Stefania Maria; Greco, Filippo; Cordelli, Duccio Maria; Cirillo, Luigi; Toni, Francesco; Baro, Valentina; Causin, Francesco; Frigo, Anna Chiara; Suppiej, Agnese; Sainati, Laura; Azzolina, Danila; Agostini, Manuela; Cesaroni, Elisabetta; De Carlo, Luigi; Di Rosa, Gabriella; Esposito, Giacomo; Grazian, Luisa; Morini, Giovanna; Nicita, Francesco; Operto, Francesca Felicia; Pruna, Dario; Ragazzi, Paola; Rollo, Massimo; Spalice, Alberto; Striano, Pasquale; Skabar, Aldo; Lanterna, Luigi Alberto; Carai, Andrea; Marras, Carlo Efisio; Manara, Renzo; Sartori, Stefan