无声的苦难:亚太地区罕见病 的认知与管理评估

随着亚太地区打算开始掌控罕见病这项社会议题,接下来将有许多重大且不断浮现的挑战需要应对。 虽然医疗与社会系统在许多层面有相当的进展,但仍有许多问题有待解决。

本次由杰特贝林CSL Behring公司赞助经济学人智库的研究将着眼于亚太地区罕见病所面临的困境、五个经济体如何准备应对这一挑战,并回顾各国相关措施如何为罕见病提供更好的医疗服务。 本报告汇整并分析了涵盖500多名临床医生的大量调查数据,以及与16位研究、医疗、政府和病友组织方面的专家的访谈,并进行了广泛的案头研究。

2019年11月至12月,经济学人智库(The Economist Intelligence Unit)访问了五个亚太市场的503名医疗专业人员,以评估他们对罕见病的了解,并找出地区医疗系统所面临的挑战。 受访者包括执业中的专科医生(n=172名)、基层医疗医师(n=229名)、护
士(n=40名)及药师(n=62名) 。 受访市场包括澳大利亚(n=103)、中国大陆(n=100)、日本(n=100)、韩国(n=100)和台湾 (n=100)。此外,我们与16名来自临床与病友组织的专家代表进行了深入情境式访谈,从而为本研究计划和这份报告提供了参考。 我们诚挚地感谢以下人员的参与及洞见:

Healthcare | How will covid-19 reshape key Australian industries?

On March 11th 2020, the Australian federal government announced a A$2.4bn (US$1.6bn) funding injection into the healthcare sector to help states and territories cover the public health costs associated with treating covid-19 cases. The overall strategy was to minimise the number of people becoming sick and dying from covid-19 as well as managing the demand on Australia’s health systems.

David Miliband: International political response to covid-19 scores “D-minus”

David Miliband is taking refuge in North-west Connecticut during the covid-19 lockdown, but his thoughts are very much global, and inevitably political. 

Covid-19 population tracker: deaths from covid-19 and the ones we must not forget

There has been a morbid fascination with the number of deaths associated with covid-19 and the extent to which countries are mishandling the crisis. But we are also facing a data crisis which distorts proper analysis of either. 

The inroads of organised crime in the era of covid-19

Over the past few weeks, experts have been examining the ways in which organised crime is exploiting the covid-19 pandemic.

Suffering in silence: Assessing rare disease awareness and management in Asia-Pacific

As the region begins to get to grips with rare diseases, it will need to address significant challenges, some of which are still emerging. Health and social systems are making progress in many of these areas, but finding solutions remains a work in progress.

Covid-19: tracking the pandemic

The secret life of coronavirus: Why we need such drastic social distancing measures

Scientists use modelling to decipher an outbreak’s transmissibility (known as R-naught) but covid-19 is playing a very different and dangerous game

Covid-19 pandemic accelerates the rise of digital payments

Could using the cash in your pocket have the potential to spread covid-19? That question has rarely appeared in the news, but many governments and leaders in the digital payments industry are wondering how the virus might impact the use of cash. Several countries have already taken drastic measures to limit circulation of bank notes. Could such interventions lead to the end of cash payments?

Covid-19: the greatest burden will fall on older people in low- and middle-income countries

Immediate global action and planning is needed as the pandemic will disproportionately hit older people living in poor countries

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