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Access to drugs for rare diseases constitutes a challenge to healthcare systems, especially those with public funding. This study aimed to map and summarize the criteria used by HTA agencies in different healthcare systems to evaluate reimbursement recommendations for orphan drugs. A comprehensive literature search was performed on the databases PubMed, LILACS, Scopus, and Embase and the gray literature (Google Scholar and websites of HTA agencies). Publications addressing the criteria used by HTA agencies in countries with public healthcare systems when evaluating reimbursement recommendations for orphan drugs were included. This scoping review included 23 studies published between 2014 and 2023, mostly consisting of reviews of HTA reports, guidance documents, and original articles. The criteria were mapped from 19 countries and ranked within three models of healthcare systems (National Health System, National Health Insurance, and Social Health Insurance). All models shared concerns about unmet needs and disease nature. In addition, NHS countries (e.g., United Kingdom, Sweden, and Italy) prioritized innovation and system-level impact, while SHI countries (e.g., Germany, France, the Netherlands) usually valued budget impact and employed expedited evaluation processes. This review provides a comprehensive understanding of the general tendencies of each healthcare system model in establishing differentiated criteria to address the challenges posed by the limited evidence and investment in the field of rare diseases.

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Health systems are complex entities. The Mexican health system includes the private and public sectors, and subsystems that target different populations based on corporatist criteria. Lack of unity and its consequences can be better understood using two concepts, segmentation and fragmentation. These reveal mechanisms and strategies that impede progress toward universality and equity in Mexico and other low- and middle-income countries. Segmentation refers to separation of the population by position in the labour market. Fragmentation refers to institutions, and to financial aspects, health care levels, states' systems of care, and organizational models. These elements explain inequitable allocation of resources and packages of health services offered by each institution to its population. Overcoming segmentation will require a shift from employment to citizenship as the basis for eligibility for public health care. Shortcomings of fragmentation can be avoided by establishing a common package of guaranteed benefits. Mexico illustrates how these two concepts characterize a common reality in low- and middle-income countries.

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Introduction: Low and medium income countries face challenges in access and delivery of surgical care, resulting in a high number of deaths and disabled individuals. Objective: To estimate the capacity to provide surgical and trauma care in public hospitals in the Piura region, Perú, a middle income country. Methods: A survey was administered in public hospitals in the Peruvian region of Piura, which combined the Spanish versions of the PIPES and INTACT surveys, and the WHO situational analysis tool. The extent of the event was assessed based in the absolute differences between the medians of the scores estimated, and the Mann-Whitney bilateral tests, according to the geographical location and the level of hospital complexity. Results: Seven public hospitals that perform surgeries in the Piura region were assessed. Three provinces (3/8) did not have any complexity healthcare institutions. The average hospital in the peripheral provinces tended to be smaller than in the capital province in INTACT (8.25 vs. 9.5, p = 0.04). Additionally, water supply issues were identified (2/7), lack of incinerator (3/7), lack of uninterrupted availability of a CT-scanner (5/7) and problems with working hours; in other words, the blood banks in two hospitals were not open 24 hours. Conclusions: There is a significant inequality among the provinces in the region in terms of their trauma care capacities and several shortfalls in the public sector healthcare infrastructure. This information is required to conduct future research on capacity measurements in every public and private institution in the Peruvian region of Piura.

Introducción: Los países de ingresos bajos y medianos tienen problemas en el acceso y la provisión de atención quirúrgica, lo cual ocasiona un alto número de fallecimientos y de personas con discapacidad. Objetivo: Estimar la capacidad para la atención quirúrgica y de pacientes traumatizados en los hospitales públicos en la región de Piura, Perú, un país de ingreso mediano. Métodos: En los hospitales públicos de la región peruana de Piura se aplicó una encuesta que combinaba las versiones en español de las encuestas PIPES e INTACT y de la herramienta de análisis situacional de la Organizacion Mundial de la Salud (OMS). Se evaluó la magnitud del evento mediante las diferencias absolutas entre las medianas de los puntajes calculados y pruebas bilaterales de Mann-Whitney según la ubicación geográfica y el nivel de complejidad hospitalaria. Resultados: Se evaluaron siete hospitales públicos que realizan cirugía en la región de Piura. Tres provincias (3/8) no contaban con instituciones sanitarias con complejidad de hospital. La mediana de los hospitales de las provincias periféricas tuvo tendencia a ser menor que la de la provincia capital en la INTACT (8,25 vs. 9,5, p = 0,04). Asimismo, se hallaron problemas de abastecimiento de agua (2/7), ausencia de incinerador (3/7), falta de funcionamiento permanente de tomógrafo (5/7) y problemas con el horario de funcionamiento de los bancos de sangre, ya que no funcionaban las 24 horas del día en 2 hospitales (2/7). Conclusiones: Se describe la alta desigualdad entre las provincias de la región en la capacidad de atención de trauma y varias carencias en la infraestructura sanitaria del sector público. Esta información es necesaria para desarrollar futura investigación de medición de capacidades en todos los establecimientos públicos y privados de la región peruana de Piura.

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El Instituto Nacional de Salud, ha llevado a cabo por primera vez el proceso de identificación de Prioridades Nacionales de Investigación en Salud Bucal a cargo de la Subdirección de Investigación y Laboratorios de Enfermedades No Transmisibles del Centro Nacional de Salud Pública con la asesoría técnica de la Dirección de Investigación e Innovación en Salud y en coordinación con la Dirección Ejecutiva de Salud Bucal de la Dirección General de Intervenciones Estratégicas en Salud Pública del Ministerio de Salud mediante metodología participativa de tres actores claves: investigadores/especialistas, expertos y decisores. El objetivo de este artículo es describir el proceso seguido para la identificación de estas prioridades, el cual comprendió cinco fases: i) identificación de objetivos estratégicos del MINSA, ii) identificación de necesidades de investigación en salud bucal, iii) revisión por expertos y valoración de las necesidades según criterios, iv) priorización (valoración de la lista de prioridades según calificación) y v) presentación de las prioridades. Como resultado se obtuvieron las 12 prioridades que posteriormente fueron aprobadas por Resolución Ministerial N.° 262-2022/MINSA, con un periodo de vigencia 2022-2026. Además, se brindaron recomendaciones para futuros procesos.

The National Institute of Health has, for the first time, identified National Priorities for Oral Health Research, this process was carried out by the Subdirectorate of Research and Laboratories of Noncommunicable Diseases of the National Center for Public Health with the technical advice of the Directorate of Research and Innovation in Health and in coordination with the Executive Directorate of Oral Health of the General Directorate of Strategic Interventions in Public Health of the Ministry of Health, using a participatory methodology with three key actors: researchers/specialists, experts and decision-makers. This article aims to describe the process used to identify these priorities, which consisted of five phases: i) identification of the strategic objectives of the Ministry of Health, ii) identification of needs in oral health research, iii) review by experts and assessment of needs according to criteria and v) presentation of the priorities. As a result, 12 priorities were obtained, which were subsequently approved by Ministerial Resolution No. 262-2022/MINSA, for a period of 2022-2026. In addition, we provide recommendations for future processes.

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BACKGROUND: Timely diagnosis of oral cancers is critical, and performing biopsies of oral lesions with suspected malignancy is a crucial step in achieving this goal. The waiting time for the diagnosis may be related to the progression and prognosis of malignant neoplasms. OBJECTIVE: The aim of this observational, cross-sectional, national-level study was to identify the factors associated with the waiting time for scheduling an oral biopsy, based on the identification of its need. METHODS: We used secondary data from the Brazilian public health system, obtained from the 2nd cycle of the National Program to Improve Access and Quality of Dental Specialty Centers (PMAQ-CEO). The study outcome was the waiting time for scheduling an oral biopsy, starting from the identification of the need for the exam. We analyzed individual and contextual variables using multilevel statistical analysis. RESULTS: In 51.8% of DSC the waiting time for scheduling a biopsy was non-immediate; in 58.1% of CEOs, the sum of the weekly workload of dentists working in the Stomatology specialty is up to 20 h per week; in terms of coverage, 67.1% of the CEOs have only municipal coverage and 34.0% are references for up to 12 oral health teams in primary health care; only the coverage variable remained significant in the multivariate model (p < 0.05). Of the contextual variables, none of the variables remained significant (p > 0.05). When these were analyzed together, only the coverage remained significant (p < 0.05); CONCLUSION: Our analysis indicates that the waiting time for scheduling an oral biopsy is longer in CEOs that cover only one municipality and is not related to contextual factors.

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Abstract Introduction: Low and medium income countries face challenges in access and delivery of surgical care, resulting in a high number of deaths and disabled individuals. Objective: To estimate the capacity to provide surgical and trauma care in public hospitals in the Piura region, Perú, a middle income country. Methods: A survey was administered in public hospitals in the Peruvian region of Piura, which combined the Spanish versions of the PIPES and INTACT surveys, and the WHO situational analysis tool. The extent of the event was assessed based in the absolute differences between the medians of the scores estimated, and the Mann-Whitney bilateral tests, according to the geographical location and the level of hospital complexity. Results: Seven public hospitals that perform surgeries in the Piura region were assessed. Three provinces (3/8) did not have any complexity healthcare institutions. The average hospital in the peripheral provinces tended to be smaller than in the capital province in INTACT (8.25 vs. 9.5, p = 0.04). Additionally, water supply issues were identified (2/7), lack of incinerator (3/7), lack of uninterrupted availability of a CT-scanner (5/7) and problems with working hours; in other words, the blood banks in two hospitals were not open 24 hours. Conclusions: There is a significant inequality among the provinces in the region in terms of their trauma care capacities and several shortfalls in the public sector healthcare infrastructure. This information is required to conduct future research on capacity measurements in every public and private institution in the Peruvian region of Piura.

Resumen Introducción: Los países de ingresos bajos y medianos tienen problemas en el acceso y la provisión de atención quirúrgica, lo cual ocasiona un alto número de fallecimientos y de personas con discapacidad. Objetivo: Estimar la capacidad para la atención quirúrgica y de pacientes traumatizados en los hospitales públicos en la región de Piura, Perú, un país de ingreso mediano. Métodos: En los hospitales públicos de la región peruana de Piura se aplicó una encuesta que combinaba las versiones en español de las encuestas PIPES e INTACT y de la herramienta de análisis situacional de la Organización Mundial de la Salud (OMS). Se evaluó la magnitud del evento mediante las diferencias absolutas entre las medianas de los puntajes calculados y pruebas bilaterales de Mann-Whitney según la ubicación geográfica y el nivel de complejidad hospitalaria. Resultados: Se evaluaron siete hospitales públicos que realizan cirugía en la región de Piura. Tres provincias (3/8) no contaban con instituciones sanitarias con complejidad de hospital. La mediana de los hospitales de las provincias periféricas tuvo tendencia a ser menor que la de la provincia capital en la INTACT (8,25 vs. 9,5, p = 0,04). Asimismo, se hallaron problemas de abastecimiento de agua (2/7), ausencia de incinerador (3/7), falta de funcionamiento permanente de tomógrafo (5/7) y problemas con el horario de funcionamiento de los bancos de sangre, ya que no funcionaban las 24 horas del día en 2 hospitales (2/7). Conclusiones: Se describe la alta desigualdad entre las provincias de la región en la capacidad de atención de trauma y varias carencias en la infraestructura sanitaria del sector público. Esta información es necesaria para desarrollar futura investigación de medición de capacidades en todos los establecimientos públicos y privados de la región peruana de Piura.

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ABSTRACT Working with PAHO/WHO to prioritize childhood cancer in the context of systems strengthening is central to St. Jude Children's Research Hospital (SJCRH)'s role as WHO Collaborating Centre for Childhood Cancer. This manuscript focuses on how SJCRH and PAHO/WHO have partnered to apply C5 (Country Collaboration for Childhood Cancer Control) to define and implement priority actions regionally, strengthening Ministry programs for childhood cancer, while implementing the Global Initiative for Childhood Cancer since 2018. Using C5, a tool developed by SJCRH, PAHO/WHO and SJCRH co-hosted regional/national workshops engaging authorities, clinicians and other stakeholders across 10 countries to map health systems needs and prioritize strategic activities (spanning Central America, Dominican Republic, Haiti, Brazil and Uruguay). SJCRH provided English/Spanish/Portuguese C5 versions/templates for analysis/prioritization exercises, and worked with PAHO/WHO and country teams to implement C5, analyze findings, and develop outputs. In an eight-country regional workshop, countries defined priorities within national/regional initiatives and ranked their value and political will, incorporating country-specific surveys and stakeholder dialogues. Each country prioritized one strategic activity for 2022-2023, exchanged insights via storytelling, and disseminated and applied results to inform country-specific and regional action plans. National workshops analyses have been incorporated into cancer control planning activities and collaborative work regionally. Implementation success factors include engaging actors beyond the clinic, enabling flexibility, and focusing on co-design with stakeholders. Joint implementation of C5 catalyzed prioritization and accelerated strategic activities to improve policies, capacity, and quality of care for children in the Americas, supporting Ministries to integrate childhood cancer interventions as part of systems strengthening.

RESUMEN La colaboración con la OPS/OMS para priorizar el cáncer infantil en el contexto del fortalecimiento de los sistemas es fundamental para la labor del St. Jude Children's Research Hospital (SJCRH) como centro colaborador de la OMS contra el cáncer infantil. Este artículo se centra en la alianza entre el SJCRH y la OPS/OMS en la aplicación de la herramienta C5 (colaboración nacional para el control del cáncer infantil) para definir y ejecutar medidas prioritarias a nivel regional, fortalecer los programas contra el cáncer infantil del ministerio y poner en marcha la Iniciativa Mundial contra el Cáncer Infantil desde el 2018. Con C5, una herramienta elaborada por el SJCRH, la OPS/OMS y este hospital organizaron conjuntamente talleres regionales y nacionales con autoridades, personal médico y otras partes interesadas en diez países para determinar cuáles son las necesidades de los sistemas de salud y priorizar las actividades estratégicas (en América Central, República Dominicana, Haití, Brasil y Uruguay). El SJCRH proporcionó versiones y plantillas de C5 en inglés, español y portugués para actividades de análisis y priorización y trabajó con la OPS/OMS y los equipos de país para ejecutar la herramienta C5, analizar los resultados y elaborar productos. En un taller regional de ocho países, se definieron las prioridades en las iniciativas regionales y nacionales, se clasificó su valor y la voluntad política y se incorporaron encuestas específicas para cada país y diálogos con las partes interesadas. Cada país priorizó una actividad estratégica para el período 2022-2023, intercambió ideas por medio de narrativas, y difundió y aplicó los resultados para fundamentar planes de acción tanto regionales como específicos para el país. Los análisis de los talleres nacionales se han incorporado a las actividades de planificación del control del cáncer y al trabajo colaborativo a nivel regional. Entre los factores de éxito de la ejecución se encuentra involucrar a los agentes más allá de lo clínico, permitir que haya flexibilidad y centrarse en un diseño elaborado en colaboración con las partes interesadas. La ejecución conjunta de la herramienta C5 catalizó la priorización y aceleró las actividades estratégicas para mejorar las políticas, la capacidad y la calidad de la atención infantil en la Región de las Américas y brindó apoyo a los ministerios para integrar las intervenciones contra el cáncer infantil en el fortalecimiento de los sistemas.

RESUMO A colaboração com a OPAS/OMS para priorizar o câncer infantil no contexto do fortalecimento dos sistemas é fundamental para o papel do St. Jude Children's Research Hospital (SJCRH) como Centro Colaborador da OMS para o Câncer Infantil. Este artigo mostra como o SJCRH e a OPAS/OMS se associaram para aplicar a ferramenta C5 (Colaboração Nacional para Controle do Câncer Infantil), com o propósito de definir e implementar ações prioritárias regionalmente, fortalecendo programas ministeriais para o câncer na infância, durante a implementação da Iniciativa Global para o Câncer Infantil desde 2018. Com auxílio da C5, uma ferramenta desenvolvida pelo SJCRH, a OPAS/OMS e o SJCRH organizaram conjuntamente oficinas regionais/nacionais com a participação de autoridades, profissionais de saúde e outras partes interessadas em 10 países, com a finalidade de mapear as necessidades dos sistemas de saúde e priorizar atividades estratégicas (abrangendo América Central, República Dominicana, Haiti, Brasil e Uruguai). O SJCRH forneceu versões/modelos da C5 em inglês, espanhol e português para exercícios de análise/priorização e colaborou com a OPAS/OMS e as equipes dos países para implementar a C5, analisar resultados e desenvolver produtos. Em uma oficina regional com oito países, foram definidas as prioridades das iniciativas nacionais/regionais e classificados seu valor e vontade política, incorporando levantamentos nacionais e diálogos entre as partes interessadas. Cada país priorizou uma atividade estratégica para 2022-2023, trocou conhecimentos por meio da narração de histórias e disseminou e aplicou os resultados para informar planos de ação nacionais e regionais. As análises das oficinas nacionais foram incorporadas às atividades de planejamento para controle do câncer e ao trabalho conjunto no âmbito regional. Entre os fatores de êxito da implementação estão o engajamento de agentes de fora do segmento da saúde, a oferta de flexibilidade e a ênfase no planejamento conjunto com as partes interessadas. A implementação conjunta da C5 catalisou a priorização e acelerou atividades estratégicas para aprimorar as políticas, a capacidade e a qualidade da atenção às crianças nas Américas, apoiando os ministérios na integração das intervenções contra o câncer infantil como parte do fortalecimento dos sistemas.

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ABSTRACT Purpose: to characterize the population with autism spectrum disorder and the Psychosocial Care Network. Methods: a study conducted with patients presented with autism spectrum disorder up to 18 years old treated at the health network in Taboão da Serra, Brazil. Participants' data were collected from medical records of the Psychosocial Care Network for Children of that city, authorized by the Municipal Department of Health, and quantitatively analyzed. Results: altogether, there were 237 patients with autism spectrum disorder in the said health network by April 2019. Of these, 188 were treated at the Psychosocial Care Network for Children, 110 of them with weekly therapy. There was a predominance of males (73.63%), age range from 3 to 10 years, with a higher percentage of 5-year old (17.27%) patients, and a mean treatment time of 32 months. The youngest age was 2 years old. Half the sample (50%) had weekly therapy and received homeopathic medication; 24 users (21.81%) were referred by speech-language-hearing therapists and 19 (17.27%), by the school they attended. Final Considerations: although the Psychosocial Care Network for Children is the reference in the region, it is known that this facility alone cannot meet all needs of individuals with autism spectrum disorder. A service network coordinated according to patient's individual needs and the region's reality would ensure their expected rights, decrease public spending, and enable these users to occupy not only one but many places in society.

RESUMO Objetivo: caracterizar a população com Transtorno do Espectro Autista e a Rede de Atenção Psicossocial de Taboão da Serra-SP. Métodos: estudo realizado com usuários da rede de saúde de Taboão da Serra com Transtorno do Espectro Autista com até 18 anos. Os dados dos participantes foram coletados dos prontuários do Centro de Atenção Psicossocial Infantil de Taboão da Serra com autorização da Secretaria Municipal de Saúde e as informações coletadas foram analisadas por vertente quantitativa. Resultados: o total de usuários com Transtorno do Espectro Autista na referida rede de saúde em abril de 2019 foi de 237. Destes, 188 realizavam atendimento no Centro de Atenção Psicossocial infantil, 110 em atendimento semanal. Verificou-se predominância do sexo masculino (73,63%), faixa etária de 3 a 10 anos com maior porcentagem em 5 anos (17,27%), e tempo médio de atendimento de 32 meses. a menor idade encontrada foi 2 anos de idade. Metade da amostra (50%) concentra-se em atendimento semanal e abordagem medicamentosa da homeopatia. Foram encaminhados 24 usuários (21,81%) pelo fonoaudiólogo e 19 (17,27%) pela escola. Considerações Finais: apesar da referência do território ser o Centro de Atenção Psicossocial infantil sabe-se que este equipamento por si só não atende a todas as necessidades dos indivíduos com Transtorno do Espectro Autista. Utilizar uma rede de serviços articulada segundo a demanda individual do paciente e a realidade do território garantiria os direitos almejados, diminuição de gastos públicos e permitiria a ocupação destes usuários não mais em um único lugar, mas sim "lugares".

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Purpose: To compare laparoscopic gynecological surgery training between a developed country's reference center (host center) and a public reference service in a developing country (home center), and use the technicity index (TI) to compare outcomes and to determine the impact of laparoscopic gynecological surgery fellowship training on the home center's TI. Methods: The impact of training on the home center was assessed by comparing surgical performance before and after training. TI was assessed in 2017 in the host center, and before and after training in the home center. Epidemiological and clinical data, and information on reason for surgery, preoperative images, estimated intraoperative bleeding, operative time, surgical specimen weight, hospital stay length, complication and reintervention rates were collected from both institutions. Home center pre-training data were retrospectively collected between 2010 and 2013, while post-training data were prospectively collected between 2015 and 2017. A two-tail Z-score was used for TI comparison. Results: The analysis included 366 hysterectomies performed at the host center in 2017, and 663 hysterectomies performed at the home center between 2015 and 2017. TI in the host center was 82.5%, while in the home center it was 6% before training and 22% after training. There were no statistical differences in length of hospital stay, preoperative uterine volume, surgical specimen weight and complication rate between centers. However, significantly shorter mean operative time and lower blood loss during surgery were observed in the host center. Conclusions: High-quality laparoscopic training in a world-renowned specialized center allowed standardizing laparoscopic hysterectomy procedures and helped to significantly improve TI in the recipient's center with comparable surgical outcomes.

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AIM: This study aims to describe how the pharmaceutical services are performed in Primary Healthcare Centers of the Brazilian Public Health System in a large city. Background: There is extensive international discussion about the role of pharmacists in health care teams, particularly in Primary Health Care (PHC). However, in Brazil, there is still no consensus on what services the pharmacist should perform in multidisciplinary teams in PHC. METHODS: This study used mixed methods research, and it was conducted with 200 pharmacists who work in PHC Centers of the public health system in São Paulo. The study was conducted using a focus group and an online survey, and qualitative and quantitative data were obtained. FINDINGS: The analysis of the data from the focus group showed two central themes: (i) pharmaceutical services go beyond medicines and (ii) the contributions of the pharmacist to a multidisciplinary team work in PHC. The survey explored 29 services provided by pharmacists, 7 of which were provided daily. It is important to emphasize that pharmacists do not differentiate the relevance attributed to services considered clinical from those that are managerial or more related to access to medicines. This is an opportunity to develop their teamwork skills. Hence, it is necessary to consolidate the professional identity of the pharmacist and to organize their work processes in a multidisciplinary team. PHC is a space that allows a wide development of pharmaceutical services.

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