Health systems sustainability for rare diseases. Preface

Abstrac

Health systems for rare diseases: financial sustainability

Introduction. Distribution of public spending on health depends on a variety of factors, from disease burden and system priorities to organisational aspects and costs. Nowadays, virtually all health care systems face serious sustainability challenges. This is particularly true for rare diseases, where priority setting involves complex and often controversial value-laden choices. Method. The theoretical framework underlying the approach of this work is based upon the State of Health in the EU, a two-year initiative undertaken by the European Commission and developed in cooperation with the Organisation for Economic Co-operation and Development and the European Observatory on Health Systems and Policies. Results. The 2017 report identified five cross-cutting sustainability issues: health promotion and disease prevention, primary care, integrated care, health workforce planning  and forecasting, person-centred health data. Implications and recommendations. Rare diseases have been one of the priorities of the Community’s programmes for research and development. The EU has stimulated a series of actions in the field of rare diseases. These project activities could set up the practical cooperation and come up with the knowledge to translate and to work on the identified five key challenges of EU Member States health systems’ sustainability and resilience

Health systems sustainability in the framework of rare diseases actions. Actions on educational programmes and training for professionals and patients

Protection of early development contributes to health of next generations. Congenital anomalies (and other adverse reproductive outcomes) are an important public health issue and early indicator of public health risks, as early development is influenced by many risk factors (e.g., nutrition, lifestyles, pollution, infections, medications, etc). Effective primary prevention requires an integrated “One Health” approach, linking knowledge  and action. This requires surveillance of health events and potential health-damaging factors, science-based risk analysis, citizens’ empowerment and education of health professionals. From the policy standpoint, joint budgeting mechanisms are needed to sustain with equity intersectoral actions (involving policy domains of health, social affairs, education, agriculture and environment). States should devote resources to strengthen registries and systematic data collection for surveillance of congenital anomalies, to better inform national prevention strategies. Investing in primary prevention based on scientific evidence is essential to support sustainable and resilient health systems and sustainable development of the society

Sustainable public health systems for rare diseases

In the framework of the Joint Action for Rare Diseases (RD-ACTION), a specific task was defined to identify mechanisms influencing sustainability, equity and resilience of health systems for rare diseases (RDs).Method: literature narrative review on health systems sustainability and resilience for RDs. Years: 2000-2015. Databases: PubMed, Scopus, EBSCOHost, EMBAL, PASCAL, EMBASE, STN International and GoogleScholar. Analysis: interpretive synthesis concept and thematic analysis (Dixon-Wood et al.)Results: 97 papers and 4 grey literature publications were identified. Two main topics stand out: economic evaluation and networks. The first topic did not identify widely accepted criterion to assign more weight to individuals with greater health needs. Healthcare network are identified as increasingly important for sustainability and resilience, in all of their aspects: professional (‘expertise’), ‘experience’ networks of users and carers; policy, learning, and interest networks.In conclusion, possible mechanisms for ensuring sustainability can be identified in networking, patients’ empowerment and reorienting healthcare towards integrated community and home care

Cooperating to improve healthcare in Arab countries

This brief note presents a few examples of successful health collaboration to improve healthcare in Arab countries. Considerable growth has been noticed in the past years in the health sector of the Middle East and North Africa region countries due to the need to address health service capacity gaps and improve the quality of health infrastructure. The rising population coupled with the aging demographic is expected to drive healthcare demand in the Arab region, augmenting its demand. In order to meet this demand, a lot of progress within the public sector has been made and several initiatives have taken place to create awareness of the most common diseases affecting the region. Among the steps undertaken in order to face the shortage of experience of medical personnel and the rising cost of the delivery of health services, the most noticeable ones relate to major investments within the realm of healthcare provision. However, country-specific drivers of disease burden should inform financial and research investments, prevention efforts, health policies, and health system improvement initiatives for all countries along the development continuum. Moreover, health gains will need to be sustained by supporting interventions on income, education, and fertility as drivers of health improvement

Cohesión social como base para políticas públicas orientadas a la equidad en salud: reflexiones desde el programa EUROsociAL

EUROsociAL es un programa de la Unión Europea para la cohesión social en América Latina. El objetivo principal de este ensayo es presentar los elementos conceptuales que sustentan las actividades implementadas por el programa EUROsociAL en el área temática de salud, con especial atención a sus aspectos de equidad. Se consideran los conceptos de cohesión social, equidad en salud, la relación entre ambos en EUROsociAL y se abordan el monitoreo de la equidad en salud como base de acción hacia una mejora con enfoque en los determinantes sociales de la salud

Continuous Professional Development and Health Governance in Egypt.

The Authors present the main activities and results of a Project financed by the Italian-Egyptian Debt Swap Agreement (IEDDS/DS) of the Italian Development Cooperation to repay public debt. The Health Governance Project operated within the Egyptian health reform paradigm and aimed at producing evidence for policy makers to direct and reorient the health sector and service management.  It developed along three phases: i) preparatory training of trainers, ii) training in health governance according to modern andragogic methods, such as problem-based learning, iii) following implementation. Project strategy focused on a training of trainers method that allowed establishing a Health Governance Unit, that is successfully replicating the Health Governance Course. It established a collaborative ground in Alexandria Governorate, jointly with public and private sector stakeholders

Exploring the usability of EUCERD core indicators for rare diseases

In the context of the Community Programme in the field of Health, the European Commission financed a series of initiatives to support the development and use of indicators for planning health services for Rare Diseases (RDs). The European Project for Rare Disease National Plans Development (EUROPLAN) elaborated a set of 59 process and outcome indicators, for monitoring the implementation and for evaluating the impact of the National Plans on RDs. Due to the high number and difficulty in handling the indicators, the subsequent Joint Action "Working for RDs" planned to derive a selection of 21 core indicators that were adopted by the European Union Committee of Experts on RDs in June 2013. The descriptive study carried out in the framework of the Joint Action to select the key indicators to orient policies for RDs shows that core indicators represent an excellent opportunity to share knowledge and comparability among Member States

La copertura sanitaria universale nel mondo. Istruzioni per l’uso. Una logica di confronto

Il presente documento fornisce, nella prima parte, un inquadramento e introduzione al concetto della Copertura Sanitaria Universale e del suo monitoraggio per offrire,nella seconda parte, degli strumenti per una maggior fruibilità dei dati per Paese,presentati in appendice,e per la loro comparazion

Mesa redonda 1. Los objetivos del desarrollo sostenible: singularización en el Mediterráneo

Taula rodona 1 del III Simposi Mediterrani de Promoció de la Salut, presentada per la Dra. Èlia Díez, de l'Agència de Salut Pública de Barcelona, que compta amb les intervencions següents: "De los objetivos del milenio a los objetivos de desarrollo sostenible ", a càrrec de la Dra. Faten Ben Abdelaziz, coordinadora de promoció de la salut de la OMS, Ginebra; "Los objetivos de desarrollo sostenible desde la perspectiva de los determinantes de la salud", a càrrec de la Dra. Blanca Patricia Mantilla Uribe, de l'Institut Proinapsa, Universidad Industrial de Santander, Colombia; "La agenda 2030 en el contexto de los países mediterráneos", a càrrec de la Dra. Rita Maria Ferrelli, de l'Istituto superiore di sanità, Itàlia; "Los objetivos de desarrollo sostenible i la cooperación", del Consell Català de Cooperació al Desenvolupamen