Access to orphan drugs – comparison across Balkan countries

The aim of this study was to compare orphan drug access in a sample of Balkan countries: five EU Member States (Bulgaria, Croatia, Greece, Romania, Slovenia) and two EU Candidates (Serbia, Montenegro). The comparative analysis was based on a cross-sectional study and included medicinal products with an active orphan designation and market authorisation on January 1, 2017.Access to orphan drugs is an ongoing challenge in these countries. Three clusters of countries were identified in terms of orphan drug access: Greece and Slovenia, making the top tier, Romania, Bulgaria, and Croatia, being in the middle, and EU Candidates, Serbia and Montenegro, forming the bottom tier, where a substantial number of EU market approved orphan drugs was not even registered. Available public health resources and market size are probably among the contributing factors for such inequalities. Sizeable part of EMA market authorised orphan medicinal products is not even priced in the Balkan countries. This is a serious issue, which is putting rare disease patients from this region in a particularly vulnerable situation.There is a need for further improvement in accessibility of orphan drugs in the Balkan countries. Cross-border collaboration in the field of pricing, health technology assessment, and reimbursement negotiation of orphan drugs may help to address these challenges.     

In-situ at a distance? challenges and opportunities for health and place research methods in a post-COVID-19 world

In-situ methodologies, including go-along and photo-elicited interviews, are ideal for harnessing people's lived experiences of place and their meanings for health and health equity. Their immersive nature means that the COVID-19 pandemic has impacted their use. Physical distancing measures combined to anxiety over the sharing of physical space have created ethical and practical challenges to the conduct of in-person in-situ methodologies. However, in-situ methodologies are precisely needed to gain deeper understandings of people's changing relationships to place post-COVID-19. In this commentary we discuss emerging challenges, highlight questions researchers should ask before engaging in these methods in the future, and explore adaptations and alternatives to traditional in-person in-situ methodologies.     

Research with youth of color in low-income communities: Strategies for recruiting and retaining participants

BackgroundYouth of color from low-income urban communities are crucial participants in research, as their involvement can shape effective, culturally responsive interventions and policy to promote youth health and well-being. These young people, however, are an often-neglected research population, due in part to perceived challenges associated with their inclusion as well as marginalized communities’ justifiable mistrust of research.ObjectivesBased on our experience conducting a school-based randomized intervention trial in Baltimore, Maryland, we present strategies for conducting research with low-income, urban youth of color. We discuss strategies in three domains: university-community partnership development, participant recruitment, and participant retention.MethodsWe reviewed partnership building and recruitment strategies employed by our team across four years of trial implementation and evaluated success of participant retention at our final survey timepoint.ResultsPartnership building was facilitated by selection of a study design that maximized benefits for all participants, promotion of capacity building at partner institutions, and attention to research staff hiring and training practices. Effective study recruitment strategies included personal contact with parents and close cooperation between school personnel and study staff. Providing incentives and collecting multiple types of participant contact information contributed to increased retention rates. On average, those who participated in the final survey timepoint were less likely to be male and Latinx and exhibited more favorable baseline mental health than those who did not, suggesting differential attrition based on youth characteristics.ConclusionsLessons learned from this school-based trial can be applied more broadly to research with low-income urban youth of color. Researchers should strive to maximize scientific rigor, minimize harm to vulnerable adolescents and their communities, promote positive research experiences for young people, and provide concrete benefits to those who participate.     

2004年～2011年江苏省卫生资源配置公平性分析

目的 分析江苏省卫生资源配置现状,为卫生行政部门优化卫生资源配置提供依据.方法 基于洛伦茨曲线和基尼系数,从人口和地理分布对江苏省13地市的卫生资源的配置状况与公平性进行分析.结果 2004年～2011年江苏市级各种卫生资源按人口分布的基尼系数位于0.15～0.25之间,按地理分布的基尼系数位于0.25～0.35之间.结论 江苏主要卫生资源的配置水平仍然较低.各种卫生资源配置的公平性较好,人口分布优于地理分布.应进一步加大卫生资源的投入力度,同时兼顾公平,缩小地区差异,重点优化护理人力资源配置.     

2010-2012年潍坊市乡镇卫生院资源配置状况及公平性研究

目的：探索乡镇卫生院资源配置公平性的变化趋势,为潍坊市乡镇卫生院资源的合理配置和区域卫生规划提供参考依据。方法采用泰尔指数对2010-2012年潍坊市乡镇卫生院的卫生资源配置公平性进行分析。结果卫生资源配置的总泰尔指数在0．00093～0．03066内,处于较低水平;床位的泰尔指数逐年上升,医师和护士的泰尔指数下降,财政补助的泰尔指数先下降后上升。结论乡镇卫生院的资源配置公平性总体较好;床位配置公平性下降;人力资源数量相对稳定,且配置公平性上升;地区间差异是财政补助配置不公平的主要因素。     

Spatial distribution of specialized cardiac care units in the state of Santa Catarina

OBJECTIVE

To analyze the methodology used for assessing the spatial distribution of specialized cardiac care units.

METHODS

A modeling and simulation method was adopted for the practical application of cardiac care service in the state of Santa Catarina, Southern Brazil, using the p-median model. As the state is divided into 21 health care regions, a methodology which suggests an arrangement of eight intermediate cardiac care units was analyzed, comparing the results obtained using data from 1996 and 2012.

RESULTS

Results obtained using data from 2012 indicated significant changes in the state, particularly in relation to the increased population density in the coastal regions. The current study provided a satisfactory response, indicated by the homogeneity of the results regarding the location of the intermediate cardiac care units and their respective regional administrations, thereby decreasing the average distance traveled by users to health care units, located in higher population density areas. The validity of the model was corroborated through the analysis of the allocation of the median vertices proposed in 1996 and 2012.

CONCLUSIONS

The current spatial distribution of specialized cardiac care units is more homogeneous and reflects the demographic changes that have occurred in the state over the last 17 years. The comparison between the two simulations and the current configuration showed the validity of the proposed model as an aid in decision making for system expansion.     

四川省卫生资源公平性研究

目的：分析四川省卫生资源的配置状况,为进一步实施区域卫生规划、优化卫生资源配置提供科学依据。方法采用洛伦兹曲线、基尼系数、泰尔指数及卫生资源密度指数（HRDI）对四川省卫生资源的配置状况和公平性进行分析与评价。结果四川省每千人口卫生资源按人口分布的基尼系数位于0．14～0．30之间,床位设置的公平性高于卫生人员;按地理分布的基尼系数位于0．60～0．74之间,资源分配显示配置不均衡;按 HRDI计算的基尼系数位于0．21～0．45之间,注册护士差距较大。泰尔指数显示,卫生资源分配组间（地区间）差异贡献率高于组内差异。结论四川省卫生资源配置公平性较好,人口分布优于地理分布,硬件资源配置公平性优于软件资源,卫生资源配置不均衡性主要来源于三类地区之间。