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.

Rare disease community is one of the largest patient populations in the world estimated to be 350 million of people. Collectively common, rare diseases pose a significant medical and economic burden for health systems worldwide. In this respect, rare diseases are considered a priority of public health. The study is a review aimed to determine whether there is evidence that education plays a key role in building sustainable health system and will allow better health and well-being for people with rare diseases to be achieved. This review shows evidence that providing quality education through different ways and actions the lives of people suffering from a rare disease and their families can be improved.

Health inequalities: a Research Positioning Exercise at the National Institute of Health, Italy.

BACKGROUND: The Italian National Institute of Health (Istituto Superiore di Sanità, ISS) considers health inequalities (HI) an important area of activity. As the scientific and technical body of the Ministry of Health and the National Health Service, ISS may play a key role to reduce HI. In order to enable ISS in addressing the new and crucial HI challenge, a Research Positioning Exercise was designed and implemented. METHODS: The Exercise included: (i) workshop to strengthen the institutional interest in the field of HI; (ii) review and analysis of ISS publications (years 2000-2017) to identify HI research topics; (iii) survey among ISS researchers regarding main research challenges to address HI in the coming years; and (iv) analysis of input on research challenges from HI international experts. RESULTS: The results of this Exercise suggest that the following points should be included in the future ISS agenda planning: (i) themes which ISS should continue working on (e.g. migrants/vulnerable groups); (ii) themes to be improved: (a) relationship between social determinants and mechanism of HI generation and (b) relationship between risk factors exposure and social determinants; and (iii) new themes to be addressed: (a) mechanisms underlying the resilience observed in Italy; (b) new socioeconomic indicators for HI monitoring; and (c) evidence-based policies aimed at reducing HI. CONCLUSION: Findings of this Exercise show that ISS researchers identified relevant areas, addressing inequalities in addressing the health. Because of ISS structural peculiarity that includes multidisciplinary expertise, the ISS could provide a significant contribution to HI research challenges and knowledge gaps.

Health Systems Sustainability and Rare Diseases.

The paper is addressing aspects of health system sustainability for rare diseases in relation to the current economic crisis and equity concerns. It takes into account the results of the narrative review carried out in the framework of the Joint Action for Rare Diseases (Joint RD-Action) "Promoting Implementation of Recommendations on Policy, Information and Data for Rare Diseases", that identified networks as key factors for health systems sustainability for rare diseases. The legal framework of European Reference Networks and their added value is also presented. Networks play a relevant role for health systems sustainability, since they are based upon, pay special attention to and can intervene on health systems knowledge development, partnership, organizational structure, resources, leadership and governance. Moreover, sustainability of health systems can not be separated from the analysis of the context and the action on it, including fiscal equity. As a result of the financial crisis of 2008, cuts of public health-care budgets jeopardized health equity, since the least wealthy suffered from the greatest health effects. Moreover, austerity policies affected economic growth much more adversely than previously believed. Therefore, reducing public health expenditure not only is going to jeopardise citizens' health, but also to hamper fair and sustainable development.

Sustainable public health systems for rare diseases.

INTRODUCTION: 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. 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.

Continuous professional development and health sector 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.

Cohesión social como base para políticas públicas orientadas a la equidad en salud: reflexiones desde el programa EUROsociAL / Social cohesion as a basis for health-equity- oriented public policies: reflections from the EUROsociAL program

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.

EUROsociAL is a European Union program for social cohesion in Latin America. The main objective of this essay is to present the conceptual elements underpinning the activities of the EUROsociAL program in the health thematic area, with special attention to their equity aspects. It considers the concepts of social cohesion, equity in health, and the relationship between the two in EUROsociAL, and addresses monitoring of equity in health as a basis of action toward improvement focusing on social determinants of health.

Cohesión social como base para políticas públicas orientadas a la equidad en salud: reflexiones desde el programa EUROsociAL / Social cohesion as a basis for health-equity-oriented public policies: reflections from the EUROsociAL program

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.

EUROsociAL is a European Union program for social cohesion in Latin America. The main objective of this essay is to present the conceptual elements underpinning the activities of the EUROsociAL program in the health thematic area, with special attention to their equity aspects. It considers the concepts of social cohesion, equity in health, and the relationship between the two in EUROsociAL, and addresses monitoring of equity in health as a basis of action toward improvement focusing on social determinants of health.

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.

[Social cohesion as a basis for health-equity- oriented public policies: reflections from the EUROsociAL program]. / Cohesión social como base para políticas públicas orientadas a la equidad en salud: reflexiones desde el programa EUROsociAL.

EUROsociAL is a European Union program for social cohesion in Latin America. The main objective of this essay is to present the conceptual elements underpinning the activities of the EUROsociAL program in the health thematic area, with special attention to their equity aspects. It considers the concepts of social cohesion, equity in health, and the relationship between the two in EUROsociAL, and addresses monitoring of equity in health as a basis of action toward improvement focusing on social determinants of health.