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 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 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.

[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.

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.

Huangqi injection (a traditional Chinese patent medicine) for chronic heart failure: a systematic review.

BACKGROUND: Chronic heart failure (CHF) is a global public health problem. Therefore, novel and effective drugs that show few side-effects are needed. Early literature studies indicated that Huangqi injection is one of the most commonly used traditional Chinese patent medicines for CHF in China. As a large number of clinical studies has been carried out and published, it is essential to evaluate the effectiveness and safety of Huangqi injection. Therefore, we carried out this systematic review under the support of the framework of the Joint Sino-Italian Laboratory (JoSIL). OBJECTIVES: To evaluate the efficacy and safety of Huangqi injection for CHF according to the available scientific knowledge. METHODS: An extensive search including PubMed, EMBASE, CBM, the Cochrane Library and Chinese literature databases was performed up to July 2008. Clinical trials regarding Huangqi injection for the treatment of CHF were searched for, irrespective of languages. The quality of each trial was assessed according to the Cochrane Reviewers' Handbook 5.0, and RevMan 5.0 provided by the Cochrane Collaboration and STATA 9.2 were used for data analysis. RESULTS: After selection of 1,205 articles, 62 RCTs and quasi-RCTs conducted in China and published in Chinese journals were included in the review. The methodological quality of the trials was low. In most trials inclusion and exclusion criteria were not specified. Furthermore, only one study evaluated the outcomes for drug efficacy after an adequate period of time. For these reasons and because of the different baseline characteristics we did not conduct a meta-analysis. CONCLUSIONS: Although available studies are not adequate to draw a conclusion on the efficacy and safety of Huangqi injection (a traditional Chinese patent medicine), we hope that our work could provide useful experience on further studies on Huangqi injections. The overall level of TCM clinical research needs to be improved so that the efficacy of TCM can be evaluated by the international community and possibly some TCM can enter into the international market.

Clinical practice of traditional Chinese medicines for chronic heart failure.

BACKGROUND: Chinese medicines have been used for chronic heart failure (CHF) for thousands of years; however, the status of traditional Chinese medicines (TCMs) used for CHF has not been reported. This review was carried out in the framework of a joint Sino-Italian Laboratory. OBJECTIVE: To investigate the baseline of clinical practice of TCMs for CHF, and to provide valuable information for research and clinical practice. METHODS: The authors included articles about the use of TCMs for the treatment of CHF by searching the Chinese Journal Full-text Database (1994 to November 2007). RESULTS: In all, 1029 papers were included, with 239 herbs retrieved from these. The most commonly used herbs included Huangqi (Radix Astragali), Fuling (Poria), Danshen (Radix Salviae Miltiorrhiae), Fuzi (Radix Aconiti Lateralis Preparata) and Tinglizi (Semen Lepidii). Modern Chinese patent medicines (produced by pharmaceutical companies) and traditional prescriptions (comprising several herbs) are the application forms of these drugs. Shenmai, Shengmai and Astragalus injections were the most commonly used Chinese patent medicines. Some classic prescriptions (including Zhenwu decoction, Shengmai powder and Lingguizhugan decoction) were also frequently used. The effectiveness and safety of the TCMs were both satisfactory, and the traditional Chinese medicine and western medicine therapy could significantly improve the clinical effectiveness and reduce some of the adverse reactions from western medicines used alone. CONCLUSION: The authors have acquired overall information about the clinical application of TCMs for CHF. Modern pharmacology has provided limited evidence for the rationality of this clinical use. Further research is needed to provide more evidence.

Complex traditional Chinese medicine for poststroke motor dysfunction: a systematic review.

BACKGROUND AND PURPOSE: For its current dimensions, stroke represents the world's primary health challenge. In China stroke is the second most common cause of death. Traditional Chinese Medicine (TCM) has for many centuries been used, and it is still widely used today in countries of south and east Asia for the treatment of people with stroke. The objective of this systematic review was to evaluate whether complex Traditional Chinese Medicine (cTCM) improves poststroke motor recovery. In particular, we defined cTCM as intervention that included at least acupuncture and Chinese herbal medicine. METHODS: An extensive search including PubMed, EMBASE, CBM, and the Cochrane Library was performed up to December 2007. Randomized clinical trials (RCTs) about cTCM for motor dysfunction of poststroke were searched irrespective of any language. The quality of each trial was assessed according to the Cochrane Reviewers' Handbook 4.2.6. RESULTS: After selection of 11 234 articles, 34 RCTs and quasi-RCTs were included. All these trials were conducted in China and published on Chinese journals. All trials but one reported results in favor of cTCM treatments suggesting a strong publication bias. Because of the significant clinical and methodological heterogeneity, no meta-analysis was performed and thus no cumulative result was obtained pooling data of RCTs. CONCLUSIONS: What appears from this systematic review is that scant data are available to evaluate efficacy of cTCM for poststroke motor dysfunction. Most of the primary studies available for this review were inadequately designed trials characterized by unknown dropout rates and definitional vagueness in outcomes measures. None of the studies approached important end points like death, survival times, rate of dependency, reduction in length of stay in hospital, etc. The key to lead to evidence-based practices is establishing a consensus on standardized relevant outcome measures and then designing and conducting appropriate RCTs that adopt those standards.

Memorias: Seminario Internacional "El mejoramiento de la calidad de los servicios de salud" / sss

El presente documento tiene el objetivo a favorecer un acercamiento al tema del mejoramiento de la calidad a los funcionarios responsables de la gerencia en los distintos niveles del sistema de salud boliviano. Conocer e intercambiar experiencias entre varias instituciones acerca del mejoramiento de la calidad en servicios de salud y las aplicaciones de la investigación operativa. Analizar, por medio de un taller, distintos aspectos de mejoramiento de la calidad de los servicios, a partir del proyecto de investigación operativa realizado por COOPI. Difundir y promocionar los resultados de las investigaciones operativas realizadas por COOPI en Bolivia

Autodiagnóstico de salud de pueblos indígenas / Health autodiagnosis of indigenous peoples

Desde el mes de junio hasta septiembre de 1994 se realizaron una serie de talleres en la sedes de las principales organizaciones indígenas adherentes a la CIDOB. Los talleres fueron organizados por la CIDOB la SNS, la OMS y UNICEF; tuvieron el objetivo de identificar problemas y necesidaes en salud de las poblaciones indígenas del Oriente Boliviano, incluyendo a la población como parte activa del proceso y no solo fuente pasiva de información.