Determinanti Sociali e Governance della Salute in Zambia: Politiche di Sviluppo ed Empowerment Partecipativo

A 30 anni dalla Dichiarazione di Alma Ata, l'Organizzazione Mondiale della Sanità, sia nei lavori della Commissione sui Determinanti Sociali della Salute che nel corso della sua 62^ Assemblea (2009) ha posto nuovamente la sua attenzione al tema dei determinanti sociali della salute e allo sviluppo di una sanità secondo un approccio "Primary Health Care", in cui la partecipazione ai processi decisionali è uno dei fattori che possono incidere sull'equità in salute tra e nelle nazioni. Dopo una presentazione dei principali elementi e concetti teorici di riferimento della tesi: Determinanti Sociali della Salute, partecipazione ed empowerment partecipativo (Cap. 1 e 2), il lavoro di tesi, a seguito dell'attività di ricerca di campo svolta in Zambia (Lusaka, Kitwe e Ndola) e presso EuropeAid (Bruxelles), si concentra sui processi di sviluppo e riforma del settore sanitario (Cap. 3), sulle politiche di cooperazione internazionale (Cap.4) e sull'azione (spesso sperimentale) della società civile in Zambia, considerando (Cap. 5): le principali criticità e limiti della/alla partecipazione, la presenza di strumenti e strategie specifiche di empowerment partecipativo, le politiche di decentramento e accountability, le buone prassi e proposte emergenti dalla società civile, le linee e i ruoli assunti dai donatori internazionali e dal Governo dello Zambia. Con questa tesi di dottorato si è voluto evidenziare e interpretare sia il dibattito recente rispetto alla partecipazione nel settore sanitario che i diversi e contraddittori gradi di attenzione alla partecipazione delle politiche di sviluppo del settore sanitario e l'emergere delle istanze e pratiche della società civile. Tutto questo incide su spazi e forme di partecipazione alla governance e ai processi decisionali nel settore sanitario, che influenzano a loro volta le politiche e condizioni di equità in salute. La metodologia adottata è stata di tipo qualitativo articolata in osservazione, interviste, analisi bibliografica e documentale.

La nuova eGovernance sanitaria europea: verso una piena integrazione della digitalizzazione nei sistemi sanitari degli Stati membri

L’elaborato approfondisce il diritto alla salute nell’ordinamento dell’Unione europea, con la consapevolezza che il settore della sanità, nella complessità di una tensione perdurante tra la sua matrice sociale e l’applicazione di logiche europee di mercato, rappresenta un ambito da sempre sottratto all’intervento diretto e vincolante delle istituzioni. Contemporaneamente, prende spunto dall’osservazione della transizione digitale dei sistemi sanitari nazionali per proporre una rilettura dei tradizionali equilibri istituzionali tra ordinamenti e constatare il grado di influenza dell’Unione oltre la dimensione transfrontaliera. Infatti, per le attuali esigenze di sostenibilità dei sistemi di tutela della salute e per il valore aggiunto riconosciuto alle azioni europee nel corso della gestione della pandemia da Covid-19, l’eHealth ha rappresentato l’occasione per una vigorosa intrusione delle istituzioni europee entro prerogative tipicamente statuali, fino all’emersione di una eGovernance sanitaria europea. Pertanto, la trattazione compie un percorso evolutivo che muove dalla Direttiva 2011/24 sull’assistenza transfrontaliera e l’assistenza sanitaria online, in combinato disposto con il complesso degli atti di soft law connessi, per verificarne l’esiguo impatto sui sistemi sanitari degli Stati membri e, alla luce dei recenti investimenti strategici ed interventi normativi rilevanti in tema di tecnologie applicate alla sanità, riconoscerne il sostanziale superamento. In particolare, il confronto tra l’insufficiente livello di digitalizzazione raggiunto finora nei sistemi sanitari degli Stati membri ed il tenore della Proposta di regolamento sullo European Health Data Space suggerisce l’evoluzione dell’impianto di governo dei dati sanitari stabilito nella Direttiva, a partire dalla previsione di una disciplina comune sulla cartella sanitaria. A questo proposito, l’interoperabilità tra tecnologie diviene un presupposto operativo indefettibile, che corrobora la natura ‘tecnologicamente condizionata’ del diritto alla salute e propone l’idea che la sanità digitale rappresenti un passo in avanti verso un’assistenza europea uniforme.

Data protection by design in the e-health care sector: theoretical and applied perspectives

In the digital age, e-health technologies play a pivotal role in the processing of medical information. As personal health data represents sensitive information concerning a data subject, enhancing data protection and security of systems and practices has become a primary concern. In recent years, there has been an increasing interest in the concept of Privacy by Design, which aims at developing a product or a service in a way that it supports privacy principles and rules. In the EU, Article 25 of the General Data Protection Regulation provides a binding obligation of implementing Data Protection by Design technical and organisational measures. This thesis explores how an e-health system could be developed and how data processing activities could be carried out to apply data protection principles and requirements from the design stage. The research attempts to bridge the gap between the legal and technical disciplines on DPbD by providing a set of guidelines for the implementation of the principle. The work is based on literature review, legal and comparative analysis, and investigation of the existing technical solutions and engineering methodologies. The work can be differentiated by theoretical and applied perspectives. First, it critically conducts a legal analysis on the principle of PbD and it studies the DPbD legal obligation and the related provisions. Later, the research contextualises the rule in the health care field by investigating the applicable legal framework for personal health data processing. Moreover, the research focuses on the US legal system by conducting a comparative analysis. Adopting an applied perspective, the research investigates the existing technical methodologies and tools to design data protection and it proposes a set of comprehensive DPbD organisational and technical guidelines for a crucial case study, that is an Electronic Health Record system.

A holistic approach for the investigation of bee health

Despite current evidence is in strong disagreement with an emergency for the conservation of Apis mellifera, great concern is related to profitability of beekeeping operations. A growing involvement of veterinary science in addressing bee health topics will therefore be fundamental to preserve and protect the entire sector. The experiments in this thesis focused on two different and interdependent levels related to bee health: the biochemical level and the parasitological level. At the biochemical level the impact of plant protection products on bee physiology and survival was studied, elucidating synergistic interactions between poor nutrition and pesticide exposure in A. mellifera and between an insecticide and a fungicide in Osmia bicornis. Moreover, an innovative fingerprinting approach on honey bee haemolymph was applied to detect population imbalances in the hive. The control of Varroa infestations was studied both at the biochemical and parasitological level. A panel of biomarkers in honey bee haemolymph was applied to compare different mite control protocols. This resulted in relevant indications for beekeeping operations pursuing the least impact on nutritional status of the colonies. To guide the decision making of beekeepers, a new formic acid evaporator was tested in comparison with a more established one. Considering its widespread distribution in the country, efforts were directed also towards N. ceranae. In particular, the pivotal aspect of diagnosis was studied, proposing a new qPCR method to overcome some limits of the existing ones. In conclusion, this works fills some of the knowledge gaps of the beekeeping sector. However, many of them still need to be addressed and the upcoming menaces of climate change and dispersal of pathogens via globalization should be targeted by research efforts in the near future. Therefore, a multifaceted vision of bee health is of capital importance, aware of the complementarity of reductionist and holistic approaches.

New knowledge, diagnostic and control tools to limit the impact of viral nervous necrosis (VNN) in the Mediterranean aquaculture sector

The role of aquaculture in satisfying the global seafood demand is essential. The expansion of the aquaculture sector and the intensification of its activities have enhanced the circulation of infectious agents. Among these, the nervous necrosis virus (NNV) represents the most widespread in the Mediterranean basin. The NNV is responsible for a severe neuropathological condition named viral nervous necrosis (VNN), impacting hugely on fish farms due to the serious disease-associated losses. Therefore, it is fundamental to develop new strategies to limit the impact of VNN in this area, interconnecting several aspects of disease management, diagnosis and prevention. This PhD thesis project, focusing on aquatic animals’ health, deals with these topics. The first two chapters expand the knowledge on VNN epidemiology and distribution, showing the possibility of interspecies transmission, persistent infections and a potential carrier role for invertebrates. The third study expands the horizon of VNN diagnosis, by developing a quick and affordable multiplex RT-PCR able to detect and simultaneously discriminate between NNV variants, reducing considerably the time and costs of genotyping. The fourth study, with the development of a fluorescent in situ hybridization technique and its application to aquatic vertebrates and invertebrates’ tissues, contributes to expand the knowledge on NNV distribution at cellular level, localizing also the replication site of the virus. Finally, the last study dealing with an in vitro evaluation of the NNV susceptibility to a commercial biocide, stress the importance to implement proper disinfectant procedures in fish farms to prevent virus spread and disease outbreaks.

Patient data sharing for the improvement of healthcare and medical research: towards a moral duty of patients to share health-related data?

The project answers to the following central research question: ‘How would a moral duty of patients to transfer (health) data for the benefit of health care improvement, research, and public health in the eHealth sector sit within the existing confidentiality, privacy, and data protection legislations?’. The improvement of healthcare services, research, and public health relies on patient data, which is why one might raise the question concerning a potential moral responsibility of patients to transfer data concerning health. Such a responsibility logically would have subsequent consequences for care providers concerning the further transferring of health data with other healthcare providers or researchers and other organisations (who also possibly transfer the data further with others and other organisations). Otherwise, the purpose of the patients’ moral duty, i.e. to improve the care system and research, would be undermined. Albeit the arguments that may exist in favour of a moral responsibility of patients to share health-related data, there are also some moral hurdles that come with such a moral responsibility. Furthermore, the existing European and national confidentiality, privacy and data protection legislations appear to hamper such a possible moral duty, and they may need to be reconsidered to unlock the full use of data for healthcare and research.

Applied genomics to monitor the genetic diversity and integrity of honey bee (Apis mellifera) populations and define sustainable strategies to benefit the beekeeping sector

Honey bees are considered keystone species in ecosystem, the effect of harmful pesticides for the honey bees, the action of extreme climatic waves and their consequence on honey bees health can cause the loss of many colonies which could contribute to the reduction of the effective population size and incentive the use of non-autochthonous queens to replace dead colonies. Over the last decades, the use of non-ligustica bee subspecies in Italy has increased and together with the mentioned phenomena exposed native honey bees to hybridization, laeding to a dramatic loss of genetic erosion and admixture. Healthy genetic diversity within honey bee populations is critical to provide tolerance and resistance to current and future threatening. Nowadays it is urgent to design strategies for the conservation of local subspecies and their valorisation on a productive scale. In this Thesis we applied genomics tool for the analysis of the genetic diversity and the genomic integrity of honey bee populations in Italy are described. In this work mtDNA based methods are presented using honey bee DNA or honey eDNA as source of information of the genetic diversity of A. mellifera at different level. Taken together, the results derived from these studies should enlarge the knowledge of the genetic diversity and integrity of the honey bee populations in Italy, filling the gap of information necessary to design efficient conservation programmes. Furthermore, the methods presented in these works will provide a tool for the honey authentication to sustain and valorise beekeeping products and sector against frauds.