Portraying Rare and Misdiagnosed Diseases in Movies

2020 ◽  
pp. 292-314
Author(s):  
Liliana Vale Costa ◽  
Ana Isabel Veloso
Keyword(s):  
Health System ◽  
Everyday Life ◽  
Rare Diseases ◽  
Drug Trials ◽  
Lack Of Information ◽  
Deep Focus

This chapter examines the portrayal of rare and misdiagnosed diseases in 9 movies from 1980 to 2018. The analysis embodies the representation of rare diseases and the suggested audiovisual strategies to comprehend the message conveyed. Most of the movies introduced the disease by highlighting its symptoms. The binomial culture of cure and care often emerges, as well as the patient's desire for the mundane pleasures in life and over dependence in a health system. The high hopes in research advances and lack of information are majorly covered in the caregivers' attempts to seek tests and drug trials and their mediator's role in patient-physician interactions. The audiovisual strategies adopted vary between the accelerated montage to communicate the contrast between the frenetic side of everyday life and the patient's process of coping with the disease, deep focus from patients to parents, and close-ups to show the individual's reactions and perspectives.

Portraying Rare and Misdiagnosed Diseases in Movies

2022 ◽  
pp. 108-126
Author(s):  
Liliana Vale Costa ◽  
Ana Isabel Veloso
Keyword(s):  
Health System ◽  
Everyday Life ◽  
Rare Diseases ◽  
Drug Trials ◽  
Lack Of Information ◽  
Deep Focus

This chapter examines the portrayal of rare and misdiagnosed diseases in 9 movies from 1980 to 2018. The analysis embodies the representation of rare diseases and the suggested audiovisual strategies to comprehend the message conveyed. Most of the movies introduced the disease by highlighting its symptoms. The binomial culture of cure and care often emerges, as well as the patient's desire for the mundane pleasures in life and over dependence in a health system. The high hopes in research advances and lack of information are majorly covered in the caregivers' attempts to seek tests and drug trials and their mediator's role in patient-physician interactions. The audiovisual strategies adopted vary between the accelerated montage to communicate the contrast between the frenetic side of everyday life and the patient's process of coping with the disease, deep focus from patients to parents, and close-ups to show the individual's reactions and perspectives.

Vernal keratoconjunctivitis: An update

2021 ◽  
pp. 112067212110221
Author(s):  
Daniele Giovanni Ghiglioni ◽  
Anna Maria Zicari ◽  
Giuseppe Fabio Parisi ◽  
Giuseppe Marchese ◽  
Cristiana Indolfi ◽  
...  
Keyword(s):  
Health System ◽  
Rare Diseases ◽  
Complex Disease ◽  
National Health System ◽  
Eye Diseases ◽  
Vernal Keratoconjunctivitis ◽  
International Level ◽  
Safety And Efficacy ◽  
Essential Step ◽  
Definition Of

Vernal keratoconjunctivitis (VKC) and atopic keratoconjunctivitis (AKC) are potentially severe and complex disease in its management among the various allergic eye diseases. In this regard, studies clarified the etiopathogenetic mechanisms. The workup should be multidisciplinary. The treatment includes topical and systemic medications with anti-inflammatory and immunosuppressant activity. However, a definition of nationally- and internationally-shared diagnostic protocols would also be needed and validated access to therapeutic options of proven safety and efficacy to avoid the use of galenic preparations, up to now still essential in the management of moderate-severe VKC. Finally, recognizing VKC and AKC, among rare diseases, at a national and international level would be an essential step to allow the management of VKC with adequate timings and settings within the National Health System.

scholarly journals WE’RE TRAINING THE MASTER’S PUBLIC HEALTH

2020 ◽  
Vol 45 (2) ◽  
Author(s):  
І. S. Mironyuk ◽  
G. O. Slabkiy ◽  
V. Y. Bilak-Lukyanchuk ◽  
V. V. Kruchanytsya
Keyword(s):  
Public Health ◽  
Health System ◽  
Public Health System ◽  
Bachelor's Degree ◽  
Ministry Of Education ◽  
Legal Basis ◽  
Prospective Students ◽  
The Public ◽  
Study Materials ◽  
Lack Of Information

Abstract Purpose of the study. The legal basis of training of specialists for the public health system and to determine the general methodological approaches and problems during the preparation of masters with specialization in «Public health» was study. Materials and methods. Materials: Legislation basis and statistics of the Ministry of Education and Science of Ukraine on admission of students with specialization in «Public Health». Methods: systematic approach, structural-logical analysis, content and statistical analysis. Results and methods. In order to ensure the effective functioning of the system in the country, «Public Health» specialty was approved and there was started the training of specialists of the first level – bachelor, and the second educational level – master. National educational standards for the training of specialists in the public health system have been approved. Licensed volumes of preparation of specialists have been approved. The enrollment of students in 2019 for the public health speciality (bachelor's degree 6,9% of licensed admission, master's degree 7,0% of licensed admission) clearly shows that this specialty does not have prestige with prospective students. The low demand for public health specialty among prospective students can be justified by the lack of information about postgraduation employment. Conclusions. Preparation of future pofessionals is carried out in accordance with the state standard, but there is no modern educational and methodological support in educational institutions. Keywords: public health, masters, preparation, number, legal basis, problems.

Hungarian National Plan and Strategy for Rare Diseases

2014 ◽  
Vol 155 (9) ◽  
pp. 325-328 ◽  
Author(s):  
György Kosztolányi
Keyword(s):  
European Union ◽  
Rare Diseases ◽  
Present Report ◽  
Health Resources ◽  
The European Union ◽  
National Plan ◽  
European Union Policy ◽  
Lack Of Information ◽  
Health Authorities ◽  
Information Research

The rarity of low prevalence diseases and the lack of information, research, diagnosis, treatment and expert availability may mean that the people affected do not benefit from the health resources and services they need. Rare diseases are considered to have little impact on society as a whole, yet they pose serious difficulties for sufferers and their families. By the end of the last century, two robust achievements in science and technology, i.e. the biotechnological and informatics revolutions, have created a real base for global approach to rare diseases by coordinating the capacities for health care, biomedical research and drug development and pooling the very limited resources available both nationally and transnationally. The European Commission has taken a number of actions which help patients and professionals to share expertise and information across borders with the objective of reducing the number of people suffering from these types of diseases. These actions together form the legal basis of the European Union policy on rare diseases. Orphan or rare diseases are now one of the priorities in the public health programmes in European Union. In 2009, the document “European Union Council Recommendation on an action in the field of rare diseases” was released with the main goal to provide national health authorities with supporting tools for the development and implementation of national plans and strategies for rare diseases by the end of 2013. This recommendation adopted by European Union Member States, allows common policy guidelines to be shared everywhere in Europe. By September 2013 the Hungarian National Plan for Rare Diseases, a health policy strategy until 2020 was finalized. The present report gives a short view on the document. Orv. Hetil., 2014, 155(9), 325–328.

scholarly journals A qualitative study exploring the needs related to the health system in women with experience of pregnancy termination due to fetal anomalies in Iran

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Bahareh Kamranpour ◽  
Mahnaz Noroozi ◽  
Masoud Bahrami
Keyword(s):  
Health System ◽  
Qualitative Content Analysis ◽  
Pregnancy Termination ◽  
Treatment Team ◽  
Fetal Anomalies ◽  
Structured Interviews ◽  
Efficient Treatment ◽  
Lack Of Information ◽  
Adequate Care ◽  
Field Notes

Abstract Background In order to provide appropriate and adequate care to women who have experienced termination of pregnancy due to fetal anomalies, the health needs of this group should be assessed. Considering the lack of information about the care and services required by these women in Iran, this study was conducted with the aim of exploring the needs related to the health system in women with experience of pregnancy termination due to fetal anomalies. Methods This study was conducted with a qualitative approach. 40 participants were selected through purposive sampling, and the data were collected through in-depth semi structured interviews and field notes, and analyzed using conventional qualitative content analysis. Results After analyzing the texts, the needs related to the health system in women with experience of pregnancy termination due to fetal anomalies were categorized in the three main categories: “efficient treatment team”, “optimal organizational structure in providing services” and “financial support for families”. Conclusions The findings of the present study by exploring and highlighting the needs related to the health system in different dimensions in women with experience of pregnancy termination due to fetal anomalies can be helpful for designing and providing basic and comprehensive care programs.

scholarly journals Digit-all: Rare Diseases

2020 ◽  
Keyword(s):  
Public Health ◽  
Health System ◽  
Rare Disease ◽  
Rare Diseases ◽  
Care Coordination ◽  
Digital Health ◽  
Global Public Health ◽  
Public Health Priority ◽  
Health Initiatives ◽  
Public Health Challenges

Rare diseases are increasingly recognised as a global public health priority and contribute to significant and disproportionately high health system impacts. Accordingly, they present clinical and public health challenges, as well as opportunities for digital health solutions across the lifespan, including improved diagnosis, treatment, navigation and care coordination, and integration and coordination for broader societal and patient wellbeing. People living with rare diseases, individually and cumulatively, are digital disruptors. In this manuscript the authors describe some of the unique dynamics of the rare disease domain as they currently, or have the potential to in the future, apply to digital health; highlight some recent international rare diseases digital health initiatives; and touch upon implications for those with more common disorders.

scholarly journals Allocation of Resources for Diagnostic and Therapeutic Interventions in Rare Diseases”

2021 ◽  
Author(s):  
Mohammadreza Mobinizade ◽  
Zeinab Fakoorfard
Keyword(s):  
Cost Effectiveness ◽  
Health System ◽  
Rare Diseases ◽  
National Level ◽  
Therapeutic Interventions ◽  
World Health ◽  
Financial Resources ◽  
The World ◽  
Health Organization ◽  
The Cost

Background: The health system is facing limited financial resources in all countries. Resource allocation is one of the tasks of the health system. Prioritizing interventions is one of the strategies that can help health policymakers in allocating financial resources. Rare diseases require more attention than other diseases due to their high cost and complex treatments. The countries use different policies to determine the effectiveness of interventions in the field of rare diseases. The purpose of this study is to refer to some policies in the field of allocating resources for rare diseases and to explain the importance of determining the threshold of cost-effectiveness for rare diseases in Iran. Methods: This research is a review study. First, a study was conducted on how to prioritize health interventions in the world and the thresholds of cost-effectiveness in different countries. Articles related to the research topic were then searched in accessible databases in Iran such as SID, Google Scholar and Medline. Finally, the obtained articles were screened and analyzed based on a thematic approach. Results: The World Health Organization (WHO) has set a threshold for determining the cost-effectiveness of health system interventions , that is determined and calculated based on the per capita GDP of each country. There are many differences between countries on policies related to the treatment of rare diseases, medicines, health care budgets and patient access. Conclusions: Due to the very high cost of treating rare diseases, it is impossible to use the threshold used for general disease interventions in rare diseases and it is necessary to use a higher threshold for rare diseases. In addition to cost-effectiveness, budget, justice, feasibility, and other criteria that are considered important at the national level should be considered.

scholarly journals The patient voice: a survey of worries and anxieties during health system transition in HIV services in Vietnam

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Shoko Matsumoto ◽  
Hoai Dung Thi Nguyen ◽  
Dung Thi Nguyen ◽  
Giang Van Tran ◽  
Junko Tanuma ◽  
...  
Keyword(s):  
Health System ◽  
Current System ◽  
Insurance Coverage ◽  
Social Health Insurance ◽  
Health Facilities ◽  
Local Health ◽  
Hiv Services ◽  
The Public ◽  
System Transition ◽  
Lack Of Information

Abstract Background Vietnam is shifting toward integrating HIV services into the public health system using social health insurance (SHI), and the HIV service delivery system is becoming decentralized. The study aim was to investigate current SHI coverage and patients’ perspectives on this transition. Methods A survey of 1348 HIV-positive patients on antiretroviral therapy (aged ≥18 years) was conducted at an HIV outpatient clinic at a central-level hospital in Hanoi, Vietnam, in October and November 2018. Insurance coverage, reasons for not having a SHI card, perceived concerns about receiving HIV services in SHI-registered local health facilities, and willingness to continue regularly visiting the current hospital were self-reported. Logistic regression analyses were performed to analyze factors associated with not having a SHI card and having concerns about receiving HIV services in SHI-registered hospitals/clinics. Results SHI coverage was 78.0%. The most frequently reported reason for not having a SHI card was that obtaining one was burdensome, followed by lack of information on how to obtain a card, and financial problems. Most patients (86.6%) had concerns about receiving HIV services at SHI-registered local health facilities, and disclosure of HIV status to neighbors and low quality of HIV services were the main concerns reported. Participants aged < 40 years old and unmarried were more likely to report lack of SHI cards, and women and those aged ≥40 years were more likely to have concerns. However, 91.4% of patients showed willingness to continue regular visits to the current hospital. Conclusions Although SHI coverage has been rapidly improving among HIV patients, most participants had concerns about the current system transition in Vietnam. In response to their voiced concerns, strengthening the link between higher-level and lower-level facilities may help to ensure good quality HIV services at all levels while mitigating patients’ worries and anxieties.

scholarly journals Development of a Dashboard for Rare Diseases – A Technical Case Report

2021 ◽  
Author(s):  
Liz A. Leutner ◽  
Franziska Bathelt ◽  
Brita Sedlmayr ◽  
Martin Sedlmayr ◽  
Michele Zoch
Keyword(s):  
Rare Diseases ◽  
Requirements Analysis ◽  
Added Value ◽  
University Hospital ◽  
User Friendliness ◽  
High Quality Research ◽  
Use Of Data ◽  
Lack Of Information ◽  
High Level ◽  
The University

About 30 million people suffer from a rare disease in Europe. Those affected face a variety of problems. These include the lack of information and difficult access to scientific knowledge for physicians. For a higher visibility of rare diseases and high-quality research, effective documentation and use of data are essential. The aim of this work is to optimize the processing, use and accessibility of data on rare diseases and thus increase the added value from existing information. While dashboards are already being used to visualize clinical data, it is unclear what requirements are prevalent for rare diseases and how these can be implemented with available development tools so that a highly accepted dashboard can be designed. For this purpose, based on an analysis of the current situation and a requirements analysis, a prototype dashboard for the visualization of up-to-date key figures on rare diseases was developed at the University Hospital Carl Gustav Carus in Dresden. The development was based on the user-centered design process in order to achieve a high-level user-friendliness. The requirements analysis identified parameters that stakeholders wanted to see, focusing primarily on statistical analyses. The dashboard handles the automated calculation of statistics as well as their preparation and provision. The evaluations showed the prototypical dashboard would be considered valuable and used by potential users. This work demonstrates that stakeholders are interested in access to prepared information and exemplifies a way to implement it. The dashboard can increase the usage of existing information in terms of a higher accessibility and thus improve the knowledge about rare diseases.

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