The article deals with one of the effects of health inequalities and gaps in access to treatments for rare diseases, namely health-driven emigration. The purpose of the paper is to systematize knowledge about the phenomenon of health emigration observed among families affected by rare diseases, for which reimbursed treatment is available, but only in selected countries. The topic proved to be niche; the issue of “health emigration in rare diseases” is an area for exploration. Therefore, the further analysis used text mining and machine learning methods based on a database selected based on keywords related to this issue. The results made it possible to systematize the guesses made by researchers in management and economic fields, to identify the most common keywords and thematic clusters around the perspective of the patient, drug manufacturer and treatment reimbursement decision-maker, and the perspective integrating all the others. Since the topic of health emigration was not directly addressed in the selected sources, the authors attempted to define the related concepts and discussed the importance of this phenomenon in managing the support system in rare diseases. Thus, they indicated directions for further research in this area.
Purpose: This article aims to present integrative medicine as a new treatment model representing the future of health systems globally, including rare diseases. Design/Methodology/Approach: The article consists of three parts. The first one covers the definitions of integrative medicine as well as other terms. The second part of the study deals with the model of patient treatment in integrative medicine. It draws attention to a multidisciplinary and holistic approach to the treatment process. The third part, showing the possibility of using an integrated model in the management of a rare disease, refers to the example of childhood CLN2 dementia. The fourth part of the article focuses on the main challenges facing health systems in the world. Findings: Integrative medicine, combining conventional medicine with alternative medicine, is an innovative approach to the treatment process. It results from the need for individualized, holistic treatment of the patient. Integrative medicine is a challenge and the future of health systems globally in establishing interdisciplinary cooperation and educating medical professionals at the primary healthcare level. The integrated model responds to the needs of people suffering from rare diseases and their families. Practical Implications: Modern medicine should focus on improving communication between all participants of the treatment process and shaping good doctor-patient relations. Planning and policy making should involve conventional and alternative medicine practitioners, as specialists in both medical disciplines would be crucial in integrating health services. These services should be adapted to the culture and requirements of a given community. The integrated model addresses the challenges of rare disease management in the context of the patient and his family. Originality/Value: The concept of integrative medicine shows that the approach is justified in managing rare diseases, treated both causally and symptomatically. Furthermore, it explains the need to consider the perspective of the patient and his family -caregivers and healthy siblings.
Purpose:The main aim of the article was to present the possibilities of improving the definition of orphan therapy implementation projects using the P5 GPM model in the context of reimbursement decisions. Design/Methodology/Approach: Theoretical research aimed at verifying the applicability of the P5 model in the practice of managing the implementation of orphan therapies. In the first part, the authors presented the essence of defining the project. Then, the background for the implementation of orphan therapies has been presented. Findings: The article presents the long-term impact relating to the limitation of the development of innovation and cooperation, as well as competences of the medical staff and the medical environment, exclusion of the patient and his family from the labour market, the increase in logistics costs related to attempts to reach the treatment, which has an impact on the natural environment. All of this results in a reduction in national welfare. The authors indicated that the use of the P5 model allows for a comprehensive analysis of the environment of orphan therapy implementation projects both in the short and long term, linking them with the goals of sustainable development, which in turn will ensure the correct definition of the project and making investment decisions. Practical Implications: Possibility to use the concept in the health technology assessment process for the purposes of the reimbursement decision, taking into account the sustainable development goals. The P5 model can be helpful in defining these types of projects. Originality/Value: A look at the logic of intervention in case of reimbursement of rare disease therapies from the perspective of the SDGs. Indication of the broad long-term impact of the project from the point of view of all its stakeholders. The considerations presented in the article constitute an introduction to empirical research, primarily in the form of casestudies.
The purpose of this article is based on the development of a children's competency, is also showed children's creativity and ability to make an innovation. The main target of the research is to assess awareness and knowledge of economics aspects in this potential group of children. Also to show how big impact had a 'children university' in a process of learning those children. Research was done on a group of "young students" taking a place into our program in west part of the country in 2016. Research results are showing that after school educational projects are very important for children who wants builds an economic knowledge. Sessions made children inspired to make a home discussion about social-economic process with their relatives. Children recognize a lot of economic idea's but sometimes they can't defined them into a right context. Children shows significant economical interest, they know well the money matters. They operates great funds management, for example how to spend and save their own pocket money. Most of the children said that being a part of this lesson's gave them an opportunity to build a economical interest and knowledge that they can use in future.
Purpose: The aim of the research is to show how effective the tools in the form of extracurricular forms of education oriented at development of key competences. Design/methodology/approach: The article presents case study of investment in key competences of school-age children. The results of evaluation studies compliment the experience of chosen out-od-school educational projects conducted in the district mostly active in the field of initiative realization. The author also mentions a problem of considering and fulfilling children’s special educational needs. Findings: In the educational projects implemented in Pomeranian Voivodeship, the main emphasis was placed on the development of key competences, mostly students, and to a lesser extent - teachers. The interest in particular competences varied (39-95%). Similarly, the effects of undertaken measures were assessed as their impact on the attitudes of students in selected areas. Research limitations/implications: Too little attention paid to the special needs of pupils. Evaluation of effectiveness referred to the influence of particular forms of stimulation on the student's attitude in selected aspects. It was impossible to clearly attribute the impact of the investment on the results of exams summarizing a given stage of learning. Practical implications: The results of the research can be used to change the guidelines for constructing further support programmes for educational projects. This refers to technical guidelines, i.e. the formula for verifying the effects and the substantive ones, i.e. The scope of support for schools and students. Social implications: The work points to the need to implement solutions allowing for greater social inclusion of children with special news, including work on social awareness in this area. Originality/value The article attempts to assess the effectiveness of investing in the development of human capital at the stage of school education through extracurricular educational projects. The analysis was multi-level, from the European background, through the regional approach in Poland, to case studies in selected local governments. The results of the research may serve to construct further pro-educational projects in the region
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