Information and Communication Technologies and Big Data: bioethical issues

25 November 2016

Abstract

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In the document A call for safeguarding the National Health Service the NBC addresses some aspects that are of paramount importance for the defence, preservation, re-launching , equity  and sustainability of the National Health Service (NHS). The NBC traces the main causes that have co-determined the serious crisis that mantles the system, among which - in the delicate moment of alignment of EU states’ budgets at the threshold of the Eurocentric pact –the process of demographic transition, coupled with an increase in life expectancy, but in worse health conditions, with increased demand for health services by an older population affected by polypathologies, which require increasingly expensive therapies for the amount of medication administered, for conditions of disability and dementia.

After analyzing the status quo of the NHS and considering that Italy is in last place for spending on prevention as part of the 34 OECD countries, the Committee recommends investing  the due- and so far neglected – portion of the National Health Fund (NHF), while creating at the same time new paths for prevention education to be widely guaranteed in the country from infancy. The NBC is extremely concerned about this issue, as it is clear that without a primary focus on prevention, the NHS will become less and less sustainable and will lose the undeniable benefits that have characterized nearly forty years of its existence.

The Committee also reiterates the need to make homogeneous the digitalization of healthcare in all regions, pointing to the continued experimentation of new organizational and management models, with particular regard to the treatment of chronically-ill and/or polypathological patients, with the related construction of Assisted Data Banks for these types of patients, thus creating the basis for the development of Individual Assistance Plans and the redefinition of a new and more appropriate tariff system. With particular regard to patients at risk of developing dementia or with full-blown cognitive decline, the Committee stresses the need to build a new healthcare system to protect vulnerable patients, aiming at the implementation of an integrated diagnostic-therapeutic-assistance pathway shared by General practitioners, specialist outpatient and home care services, and expert NHS memory clinics. In the case of fragile patients, it is also recommended that special attention be paid to children, from pre-natal prevention to the treatment of chronic disabling, congenital or acquired diseases, a growing trend, which requires urgent rebalancing of the differences which exist given the North and Centre-South gap, particularly regarding child mortality.

Furthermore, the Committee, aware of the recent approval of new essential assistance levels (LEA), recommends their periodic and programmed review, reiterating that this be based on the criteria of evidence and cost-effectiveness, otherwise the resulting non-sustainability of the system and dissipation of public resources, due to the provision of certain non-evidence-based care, would be to the detriment of other necessary patient care.  In addition, the Committee highlights the huge and growing private expense borne by citizens and families, calling for its reduction in the short-term, also because of the existing unequal gap between citizens with the economic means to quickly resolve their problems, and those who are either subjected to long waiting times or are left without any assistance, as they can not afford it. In the current scenario, the Committee also recommends that the NHS should provide for additional funds that must be "compulsorily" invested for vocational and interprofessional training throughout the country and, above all, in those regions subjected to a recovery plan, where in recent years the resources theoretically for this purpose have been drastically reduced or zeroed for reasons related to meeting the general objectives set out in the plans themselves.

It also seems indispensible to the NBC for research activity to be fully recognized as a fundamental part of the NHS, to which a predetermined annual budget should be allocated, initially guaranteeing a minimum of one percent of the NHF, with the aim of allocating additional resources, once the country’s current financial crisis has been overcome. Lastly, with particular regard to protection against the fraud and corruption that pervades the NHS, the Committee, while appreciating the initiatives already launched in general in Public Administrations and in particular in the NHS, considers that the gravity of the current situation requires immediate effective action. Inspired by the effectiveness of the actions of the United Kingdom model - from which Italy has drawn the most important inspirational principles for decades - the Committee therefore recommends assessing the urgent establishment of a special Anti-Fraud and Corruption Directorate in Healthcare, within the Ministry of Health, with the presence of a corpus of multidisciplinary specialists, as already provided for in the past LD N. 32/2003, which so far has never been implemented.

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