scholarly journals Patient’s thoughts and expectations about centres of expertise for PKU

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
A. M. J. van Wegberg ◽  
A. MacDonald ◽  
D. Abeln ◽  
T. S. Hagedorn ◽  
E. Lange ◽  
...  

Abstract Background In the Netherlands (NL) the government assigned 2 hospitals as centres of expertise (CE) for Phenylketonuria (PKU), while in the United Kingdom (UK) and Germany no centres are assigned specifically as PKU CE’s. Methods To identify expectations of patients/caregivers with PKU of CEs, a web-based survey was distributed through the national Phenylketonuria societies of Germany, NL and UK. Results In total, 105 responded (43 patients, 56 parents, 4 grandparents, 2 other) of whom 59 were from NL, 33 from UK and 13 from Germany. All participants (n = 105) agreed that patients and/or practitioners would benefit from CEs. The frequency patients would want to visit a CE, when not treated in a CE (n = 83) varied: every hospital visit (24%, n = 20), annual or bi-annual (45%, n = 37), at defined patient ages (6%, n = 5), one visit only (22%, n = 18), or never (4%, n = 3). Distance was reported as a major barrier (42%, n = 35). 78% (n = 65) expected CE physicians and dieticians to have a higher level of knowledge than in non-CE centres. For participants already treated in a CE (n = 68), 66% requested a more extensive annual or bi-annual review. In general, psychology review and neuropsychologist assessment were identified as necessary by approximately half of the 105 participants. In addition, 66% (n = 68) expected a strong collaboration with patient associations. Conclusion In this small study, most participants expected that assigning CEs will change the structure of and delivery of Phenylketonuria care.

2019 ◽  
Vol 11 (1) ◽  
pp. 8-19
Author(s):  
Crystal Jelita Lumban Tobing

 KPPN Medan II is one of the government organization units at the Ministry of Finance. Where leaders and employees who work at KPPN Medan II always carry out official trips between cities and outside the city. With these conditions, making SPPD documents experiencing the intensity of official travel activities carried out by employees of KPPN Medan II can be said frequently. So that in making SPPD in KPPN Medan II is still using the manual method that is recording through Microsoft Word which in the sense is less effective and efficient. In naming employees who get official assignments, officers manually entering employee data that receives official travel letters are prone to being lost because data is manually written. The web-based SPPD application is built by applying this prototyping method which is expected to facilitate SPPD KPPN Medan II management officers in making SPPD that is effective, efficient, accurate, time-saving, and not prone to losing SPPD data of KPPN Medan II employees who will has made official trips due to the existence of a special database to accommodate all SPPD files.


Author(s):  
Mykola Trofymenko

Public diplomacy of Great Britain is one of the most developed in the EU and in the world. The United Kingdom has developed an extremely efficient public diplomacy mechanism which includes BBC World Service (which due to its popularity boosts the reputation and the image of Great Britain), Chevening Scholarships (provides outstanding foreign students with opportunity to study in Great Britain and thus establishes long-lasting relations with public opinion leaders and foreign countries elite) and the British Council, which deals with international diplomatic ties in the field of culture. The British Council is a unique organization. Being technically independent, it actively and efficiently works on consolidating Great Britain’s interests in the world and contributes to the development of public diplomacy in Great Britain.   The author studies the efforts of the British Council as a unique public diplomacy tool of the United Kingdom. Special attention is paid to the role of British Council, which is independent of the governing board and at the same time finds itself under the influence of the latter due to the peculiarities of the appointment of Board’s officials, financing etc. The author concludes that the British Council is a unique organization established in 1934, which is a non-departmental state body, charitable organization and public corporation, technically independent of the government. The British Council, thanks to its commercial activities covers the lack of public funding caused by the policy of economy conducted by the government. It has good practices in this field worth paying attention by other countries. It is also worth mentioning that the increment in profit was getting higher last year, however the issue of increasing the influence of the government on the activities of British Council is still disputable. Although the Foreign Minister officially reports to the parliament on the activities of the British Council, approves the appointment of the leaders of organizations, the British Council preserves its independence of the government, which makes it more popular abroad, and makes positive influence on the world image of Great Britain. The efficiency of the British Council efforts on fulfillment of targets of the United Kingdom public diplomacy is unquestionable, no matter how it calls its activities: whether it is a cultural relations establishment or a cultural diplomacy implementation. Keywords: The British Council, public diplomacy, cultural diplomacy, cultural relations, Foreign Office, Her Majesty’s Government, official assistance for development


2012 ◽  
Vol 163 (5) ◽  
pp. 145-154 ◽  
Author(s):  
Willi Zimmermann

Annual review of Swiss forest policy 2011 The revision of the Forest Act, the adoption of the Forest Programme 2020 by the Federal Council as well as the preparation of the second contribution period of the New System of Financial Equalisation and Division of Tasks between the Confederation and the Cantons (NFE) shaped, in addition to the routine business, the forest policy of 2011. The parliamentary initiatives on forest and forest policy issues remained of about the same amount as in previous years, while the Federal Court decisions on forest legislation have declined significantly. In various forest-related sectoral policies, the government and parliament made important decisions. In climate policy, the Parliament adopted the CO2 Law. However, this has not yet happened to the revision of the Spatial Planning Act. In nature and landscape policy, the administration has prepared the Swiss biodiversity strategy so far that the Federal Council could send it out for consultation. The revision of the Hunting Regulation, with changes in the management of large carnivores, is nearing adoption. At the international level, the Federal Council has submitted the European Landscape Convention to the Parliament for ratification, and the European forestry ministers have agreed to the preparation of a European Forest Convention.


2019 ◽  
Vol 1 (1) ◽  
pp. 33-45
Author(s):  
Rosdiana Rosdiana ◽  
Padeli Padeli ◽  
Revi Sajidah Sri Handayani ◽  
Rifky Alfian

The public service administration system at the government offices of the Kemiri village office in the Kemiri District currently does not have a computerized and integrated system. Because the system runs, residents who submit letters for administrative completeness, still use the Ms.Word / Ms.Excel application. of course has many weaknesses including human error, not neat in file storage, resulting in the lengthy process of searching and making a cover letter and required reports. The analytical method used in this study is to use PIECES (Performance, Informance, Economy, Control, Efficiency, Service) analysis, the design of the model uses UML (Unified Modeling Language). The results of this study are web-based letter information systems at the Office of the Village Chief of Kemiri that can accessed using a local computer browser. Thus the information letter needed by the Kemiri Village community and more effective and efficient in making the letter.


2018 ◽  
Vol 49 ◽  
pp. 02003
Author(s):  
Dyah Ayu Puri Palupi ◽  
Mardanung Patmo Cahjono ◽  
Kristyana Dananti

This study aims to develop lecturer performance appraisal model using web-based Integrated Evaluation Model (IEM). The object of this study is certified lecturers in Indonesia, by applying this model, the certification compensation given by the government is really used to enhance lecturer's performance. It is expected that the results of this study can be an important research that produces effective and efficient software to evaluate the lecturers' performance nationally because it involves a 360degree assessment. We have done some activities to develop the prototype software application of Integrated Evaluation Model (IEM) for assessing the certified lecturer's performance. They are 1) preparing the questionnaire indicator for the 360 degree performance appraisal, 2) conduct the program test on the certified lecturer. In this phase, certified lecturers, superior, and students also conduct assessment on certified lecturers through IEM software, 3) conduct Focus Group Discussion (FGD) to gain evaluation and feedback on the effectiveness of the IEM application program. FGD results provide a valuable contribution to the preparation of IEM program design. And the IEM software produced in this research has accommodated all of the results of FGD activities. IEM complements the prior certified lecturer performance appraisal with 360 degrees performance appraisal.


Author(s):  
Lucy Barnes ◽  
Timothy Hicks

Abstract Public opinion on complex policy questions is shaped by the ways in which elites simplify the issues. Given the prevalence of metaphor and analogy as tools for cognitive problem solving, the deployment of analogies is often proposed as a tool for this kind of influence. For instance, a prominent explanation for the acceptance of austerity is that voters understand government deficits through an analogy to household borrowing. Indeed, there are theoretical reasons to think the household finance analogy represents a most likely case for the causal influence of analogical reasoning on policy preferences. This article examines this best-case scenario using original survey data from the United Kingdom. It reports observational and experimental analyses that find no evidence of causation running from the household analogy to preferences over the government budget. Rather, endorsement of the analogy is invoked ex post to justify support for fiscal consolidation.


2021 ◽  
Vol 54 (1) ◽  
pp. 163-185
Author(s):  
Sung Min Han ◽  
Mi Jeong Shin

AbstractIn this article, we argue that rising housing prices increase voter approval of incumbent governments because such a rise increases personal wealth, which leads to greater voter satisfaction. This effect is strongest under right-wing governments because those who benefit from rising prices—homeowners—are more likely to be right-leaning. Non-homeowners, who are more likely to vote for left-leaning parties, will view rising housing prices as a disadvantage and therefore feel the government does not serve them well, which will mitigate the advantage to left-wing governments. We find support for our arguments using both macro-level data (housing prices and government approval ratings in 16 industrialized countries between 1960 and 2017) and micro-level data (housing prices and individuals’ vote choices in the United Kingdom using the British Household Panel Survey). The findings imply that housing booms benefit incumbent governments generally and right-wing ones in particular.


Author(s):  
Di Long ◽  
Suzanne Polinder ◽  
Gouke J. Bonsel ◽  
Juanita A. Haagsma

Abstract Purpose To assess the test–retest reliability of the EQ-5D-5L and the reworded Quality of Life After Traumatic Brain Injury Overall Scale (QOLIBRI-OS) for the general population of Italy, the Netherlands, and the United Kingdom (UK). Methods The sample contains 1864 members of the general population (aged 18–75 years) of Italy, the Netherlands, and the UK who completed a web-based questionnaire at two consecutive time points. The survey included items on gender, age, level of education, occupational status, household annual income, chronic health status, and the EQ-5D-5L and reworded QOLIBRI-OS instrument. Test–retest reliability of the EQ-5D-5L dimensions, EQ-5D-5L summary index, EQ VAS, reworded QOLIBRI-OS dimensions and reworded QOLIBRI-OS level sum score was examined by Gwet’s Agreement Coefficient (Gwet’s AC) and Intraclass Correlation Coefficient (ICC). Results Gwet’s AC ranged from 0.64 to 0.97 for EQ-5D-5L dimensions. The ICC ranged from 0.73 to 0.84 for the EQ-5D-5L summary index and 0.61 to 0.68 for EQ VAS in the three countries. Gwet’s AC ranged from 0.35 to 0.55 for reworded QOLIBRI-OS dimensions in the three countries. The ICC ranged from 0.69 to 0.77 for reworded QOLIBRI-OS level sum score. Conclusion Test–retest reliability of the EQ-5D-5L administered via a web-based questionnaire was substantial to almost perfect for the EQ-5D-5L dimensions, good for EQ-5D-5L summary index, and moderate for the EQ VAS. However, test–retest reliability was less satisfactory for the reworded QOLIBRI-OS. This indicates that the web-based EQ-5D-5L is a reliable instrument for the general population, but further research of the reworded QOLIBRI-OS is required.


2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Halit Cinarka ◽  
Mehmet Atilla Uysal ◽  
Atilla Cifter ◽  
Elif Yelda Niksarlioglu ◽  
Aslı Çarkoğlu

AbstractThis study aims to evaluate the monitoring and predictive value of web-based symptoms (fever, cough, dyspnea) searches for COVID-19 spread. Daily search interests from Turkey, Italy, Spain, France, and the United Kingdom were obtained from Google Trends (GT) between January 1, 2020, and August 31, 2020. In addition to conventional correlational models, we studied the time-varying correlation between GT search and new case reports; we used dynamic conditional correlation (DCC) and sliding windows correlation models. We found time-varying correlations between pulmonary symptoms on GT and new cases to be significant. The DCC model proved more powerful than the sliding windows correlation model. This model also provided better at time-varying correlations (r ≥ 0.90) during the first wave of the pandemic. We used a root means square error (RMSE) approach to attain symptom-specific shift days and showed that pulmonary symptom searches on GT should be shifted separately. Web-based search interest for pulmonary symptoms of COVID-19 is a reliable predictor of later reported cases for the first wave of the COVID-19 pandemic. Illness-specific symptom search interest on GT can be used to alert the healthcare system to prepare and allocate resources needed ahead of time.


2021 ◽  
pp. 095792652110131
Author(s):  
Michael Billig

This paper examines how the British government has used statistics about COVID-19 for political ends. A distinction is made between precise and round numbers. Historically, using round numbers to estimate the spread of disease gave way in the 19th century to the sort precise, but not necessarily accurate, statistics that are now being used to record COVID-19. However, round numbers have continued to exert rhetorical, ‘semi-magical’ power by simultaneously conveying both quantity and quality. This is demonstrated in examples from the British government’s claims about COVID-19. The paper illustrates how senior members of the UK government use ‘good’ round numbers to frame their COVID-19 goals and to announce apparent achievements. These round numbers can provide political incentives to manipulate the production of precise number; again examples from the UK government are given.


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