In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
Suffering in silence: Assessing rare disease awareness and management in As...
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.
This Economist Intelligence Unit study, sponsored by CSL Behring, looks at the nature of the rare disease challenge in the region, how prepared five of its economies are to face it, and reviews the initiatives aiming to provide better care. It draws on a substantial survey of over 500 clinicians, interviews with 16 academic, medical, government and patient experts, and extensive desk research.
In November-December 2019, The Economist Intelligence Unit surveyed 503 healthcare professionals across five Asia-Pacific markets to gauge their understanding of rare diseases and identify the challenges faced by national health systems. Respondents comprised currently practicing specialist physicians (n=172), general practitioners (n=229), nurses (n=40) and pharmacists (n=62). Markets included were Australia (n=103), China (n=100), Japan (n=100), South Korea (n=100) and Taiwan (n=100).
In addition, in-depth contextualising interviews were conducted with 16 expert representatives of clinical practice and patient organisations to inform our research programme and this report. Our sincerest thanks go to the following for their time and insight:
Takeya Adachi, program officer, Agency for Medical Research and Development, Japan
Younjhin Ahn, Division of Rare Diseases, Korean National Institute of Health Centre for Biomedical Sciences, South Korea
Matthew Bellgard, professor and director of eResearch, Queensland University of Technology, Australia and chair of the Asia Pacific Economic Cooperation (APEC) Rare Disease Network, Australia
Gareth Baynam, clinical geneticist and director of the Undiagnosed Diseases Program Genetic Services of Western Australia, Australia
Dong Dong, research assistant professor, Chinese University of Hong Kong, Hong Kong SAR
Elizabeth Elliott, professor of Paediatrics and Child Health, University of Sydney, Australia
Kevin Huang, founder, Chinese Organization for Rare Disorders, China
Ritu Jain, president, Asia-Pacific Alliance of Rare Disease Organisation, Singapore
Sonoko Misawa, associate professor, Chiba University Graduate School of Medicine, Japan
Yukiko Nishimura, founder and president, NPO ASrid (Advocacy Service for Rare and Intractable Diseases’ Multi-Stakeholders in Japan)
Min-Chieh Tseng, co-founder, Taiwan Foundation for Rare Diseases, Taiwan
Gregory Vijayendran, chair, Rainbow Across Borders
Richard Vines, chair, Rare Cancers Australia, Australia
Jiaan-Der Wang, director of the Centre for Rare Diseases and Haemophilia, Taichung
Veterans General Hospital, Taiwan
Yi’ou Wang, secretary-general, Illness Challenge Foundation, China
Chao-Chun Wu, deputy director general, Health Promotion Administration Taiwan
This research project was sponsored by CSL Behring. This report was written by Paul Kielstra and edited by Jesse Quigley Jones of The Economist Intelligence Unit.
Other language versions:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in Au...
In November-December 2019, The Economist Intelligence Unit surveyed 103 practising healthcare professionals from Australia, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Australia comprised general practitioners or primary care physicians (45.5%), specialist physicians (34.2%), nurses (8.0%) and pharmacists (12.3%). Respondents predominately worked in private (49.7%) and public or teaching healthcare institutions (46.5%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in Ta...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Taiwan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Taiwan comprised general practitioners or primary care physicians (46%), specialist physicians (34%), nurses (10%) and pharmacists (10%). Respondents were split between private (54.0%) and public (21%) or teaching
healthcare institutions (25%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from China; as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from China comprised general practitioners or primary care physicians (44%), specialist physicians (36%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in public hospitals (74%) with 13% working in a teaching hospital, and 8% employed in a private hospital or outpatient clinic.
Suffering in silence: Assessing rare disease awareness and management in As...
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.
This Economist Intelligence Unit study, sponsored by CSL Behring, looks at the nature of the rare disease challenge in the region, how prepared five of its economies are to face it, and reviews the initiatives aiming to provide better care. It draws on a substantial survey of over 500 clinicians, interviews with 16 academic, medical, government and patient experts, and extensive desk research.
In November-December 2019, The Economist Intelligence Unit surveyed 503 healthcare professionals across five Asia-Pacific markets to gauge their understanding of rare diseases and identify the challenges faced by national health systems. Respondents comprised currently practicing specialist physicians (n=172), general practitioners (n=229), nurses (n=40) and pharmacists (n=62). Markets included were Australia (n=103), China (n=100), Japan (n=100), South Korea (n=100) and Taiwan (n=100).
In addition, in-depth contextualising interviews were conducted with 16 expert representatives of clinical practice and patient organisations to inform our research programme and this report. Our sincerest thanks go to the following for their time and insight:
Takeya Adachi, program officer, Agency for Medical Research and Development, Japan
Younjhin Ahn, Division of Rare Diseases, Korean National Institute of Health Centre for Biomedical Sciences, South Korea
Matthew Bellgard, professor and director of eResearch, Queensland University of Technology, Australia and chair of the Asia Pacific Economic Cooperation (APEC) Rare Disease Network, Australia
Gareth Baynam, clinical geneticist and director of the Undiagnosed Diseases Program Genetic Services of Western Australia, Australia
Dong Dong, research assistant professor, Chinese University of Hong Kong, Hong Kong SAR
Elizabeth Elliott, professor of Paediatrics and Child Health, University of Sydney, Australia
Kevin Huang, founder, Chinese Organization for Rare Disorders, China
Ritu Jain, president, Asia-Pacific Alliance of Rare Disease Organisation, Singapore
Sonoko Misawa, associate professor, Chiba University Graduate School of Medicine, Japan
Yukiko Nishimura, founder and president, NPO ASrid (Advocacy Service for Rare and Intractable Diseases’ Multi-Stakeholders in Japan)
Min-Chieh Tseng, co-founder, Taiwan Foundation for Rare Diseases, Taiwan
Gregory Vijayendran, chair, Rainbow Across Borders
Richard Vines, chair, Rare Cancers Australia, Australia
Jiaan-Der Wang, director of the Centre for Rare Diseases and Haemophilia, Taichung
Veterans General Hospital, Taiwan
Yi’ou Wang, secretary-general, Illness Challenge Foundation, China
Chao-Chun Wu, deputy director general, Health Promotion Administration Taiwan
This research project was sponsored by CSL Behring. This report was written by Paul Kielstra and edited by Jesse Quigley Jones of The Economist Intelligence Unit.
Other language versions:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in Au...
In November-December 2019, The Economist Intelligence Unit surveyed 103 practising healthcare professionals from Australia, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Australia comprised general practitioners or primary care physicians (45.5%), specialist physicians (34.2%), nurses (8.0%) and pharmacists (12.3%). Respondents predominately worked in private (49.7%) and public or teaching healthcare institutions (46.5%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in So...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from South Korea, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from South Korea comprised general practitioners or primary care physicians (45%), specialist physicians (35%), nurses (10%) and pharmacists (10%). Respondents reported working in predominantly private (58%) and public (12%) or teaching healthcare institutions (25%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
In November-December 2019, The Economist Intelligence Unit surveyed 103 practising healthcare professionals from Australia, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Australia comprised general practitioners or primary care physicians (45.5%), specialist physicians (34.2%), nurses (8.0%) and pharmacists (12.3%). Respondents predominately worked in private (49.7%) and public or teaching healthcare institutions (46.5%).
於2019年11月至12月，經濟學人智庫 (The Economist Intelligence Unit)調查了5個亞太國家的503名醫療專業人員，以評估他們對罕見疾病的了解，並找出國家醫療系統所面臨的挑戰。受訪者包括執業專科醫生(n=172名)、基層醫療醫師(n=229名)、護士(n=40名)及藥師(n=62名)。受訪市場包括澳洲(n=103)、中國(n=100)、日本(n=100)、韓國(n=100)和台灣(n=100)。
희귀질환에 대한 이해와 함께 아태지역국가들은 중대한 과제들을 해결해야 하며 일부과제들은 아직도 부상 중이다. 많은 아태국가들의 보건사회제도가 발전하고 있지만해결책을 모색하는 과정은 아직도 진행 중이다
The Economist Intelligence Unit 의 이번보고서는 CSL Behring 의 후원으로 아태지역에서의 희귀질환의 양상을 살펴보고, 다섯아태 국가의 희귀질환 대응 수준 및 환자진료개선을 위한 정책들을 검토한다. 본 보고서는500 명 이상의 임상가, 16 명의 학계, 의료계, 정부, 환자 전문가들을 대상으로 한 설문조사와 광범위한 자료조사를 토대로작성되었다.
2019 년 11,12 월에 걸쳐 EIU 는 아시아태평양 지역에서의 희귀질환에 대한이해수준과 의료제도 차원의 과제를파악하기 위해 지역내 다섯 국가의 503 명의의료 전문가들을 대상으로 설문조사를실시했다. 설문 참가자들은 현직 전문의172 명, 일반의 229 명, 간호사 40 명, 약사62 명으로서, 국가별 분포는 호주 103 명,중국 100 명, 일본 100 명, 한국 100 명, 대만100 명과 같다.이와 더불어 16 명의 임상 전문가 및 환자단체 대표들과 자문/ 심층 인터뷰를 실시하였다. 지면을 빌어 아래의 전문가/대표들의 시간과 고견에 심심한 감사의 말씀을 전한다:
Takeya Adachi, 일본 의학연구개발소프로그램 담당
안윤진,한국 국립보건연구원생명의과학센터 난치성질환과
Matthew Bellgard, 호주 퀸즐랜드공과대학교 교수 및 전자연구소장, 아시아태평양경제협력체 (APEC) 희귀질환네트워크 의장
Gareth Baynam, 호주 웨스턴오스트레일리아 주 미진단 질환프로그램 유전학 서비스 과장 및 임상유전학 전문가
Dong Dong, 홍콩 특별자치구중문대학교 연구조교수
Elizabeth Elliott, 호주 시드니 대학교소아 청소년과 교수
Kevin Huang, 중국 희귀질환연합 창립자
Ritu Jain,싱가포르 아시아태평양 희귀질환연합 대표
Sonoko Misawa, 일본 지바대학교의과대학원 부교수
Yukiko Nishimura, NPO ASrid (일본희귀난치성 질환 이해관계자 권리증진서비스)창립 대표
Min-Chieh Tseng, 대만 희귀질환재단공동설립자
Gregory Vijayendran, Rainbow Across Borders대표
Richard Vines, 호주 Rare Cancers Australia 대표
Jiaan-Der Wang, 대만 타이충 보훈병원희귀질환 및 혈우병 센터장
Yi’ou Wang, Illness Challenge Foundation사무국장
Chao-Chun Wu, 대만 건강증진청 사무차장
본 연구는CSL Behring사의 후원으로이루어졌으며 보고서 작성은 Paul Kielstra (EIU), 편집은 Jesse Quigley Jones(EIU)가 담당하였다.
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
於2019年11月至12月，經濟學人智庫 (The Economist Intelligence Unit)調查了5個亞太國家的503名醫療專業人員，以評估他們對罕見疾病的了解，並找出國家醫療系統所面臨的挑戰。受訪者包括執業專科醫生(n=172名)、基層醫療醫師(n=229名)、護士(n=40名)及藥師(n=62名)。受訪市場包括澳洲(n=103)、中國(n=100)、日本(n=100)、韓國(n=100)和台灣(n=100)。
Value-based healthcare in Sweden: Reaching the next level
The need to get better value from healthcare investment has never been more important as ageing populations and increasing numbers of people with multiple chronic conditions force governments to make limited financial resources go further.
These pressures, along with a greater focus on patient-centred care, have raised the profile of VBHC, especially in European healthcare systems. Sweden, with its highly comprehensive and egalitarian healthcare system, has been a leader in implementing VBHC from the beginning, a fact that was underscored in a 2016 global assessment of VBHC published by The Economist Intelligence Unit.
This paper looks at the ways in which Sweden has implemented VBHC, the areas in which it has faced obstacles and the lessons that it can teach other countries and health systems looking to improve the value of their own healthcare investments.
Breast cancer patients and survivors in the Asia-Pacific workforce
With more older women also working, how will the rising trend of breast cancer survivorship manifest in workplace policies, practices and culture? What challenges do breast cancer survivors face when trying to reintegrate into the workforce, or to continue working during treatment? How can governments, companies and society at large play a constructive role?
This series of reports looks at the situation for breast cancer survivors in Australia, New Zealand and South Korea. It finds that while progress has been made, more needs to be done, particularly in South Korea, where public stigma around cancer remains high.
Cardiovascular diseases levy a substantial financial toll on individuals, their households and the public finances. These include the costs of hospital treatment, long-term disease management and recurring incidence of heart attacks and stroke. They also include the costs of functional impairment and knock-on costs as families may lose breadwinners or have to withdraw other family members from the workforce to care for a CVD patient. Governments also lose tax revenue due to early retirement and mortality, and can be forced to reallocate public finances from other budgets to maintain an accessible healthcare system in the face of rising costs.
As such, there is a need for more awareness of the ways in which people should actively work to reduce their CVD risk. There is also a need for more primary and secondary preventative support from health agencies, policymakers and nongovernmental groups.
To inform the decisions and strategies of these stakeholders, The Economist Intelligence Unit and EIU Healthcare, its healthcare subsidiary, have conducted a study of the prevalence and costs of the top four modifiable risk factors that contribute to CVDs across the Asian markets of China, Australia, Hong Kong, Japan, Singapore, South Korea, Taiwan and Thailand.
희귀질환에 대한 이해와 함께 아태지역국가들은 중대한 과제들을 해결해야 하며 일부과제들은 아직도 부상 중이다. 많은 아태국가들의 보건사회제도가 발전하고 있지만해결책을 모색하는 과정은 아직도 진행 중이다
The Economist Intelligence Unit 의 이번보고서는 CSL Behring 의 후원으로 아태지역에서의 희귀질환의 양상을 살펴보고, 다섯아태 국가의 희귀질환 대응 수준 및 환자진료개선을 위한 정책들을 검토한다. 본 보고서는500 명 이상의 임상가, 16 명의 학계, 의료계, 정부, 환자 전문가들을 대상으로 한 설문조사와 광범위한 자료조사를 토대로작성되었다.
Related content
17458
Health
Suffering in silence: Assessing rare disease awareness and management in As...
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.
This Economist Intelligence Unit study, sponsored by CSL Behring, looks at the nature of the rare disease challenge in the region, how prepared five of its economies are to face it, and reviews the initiatives aiming to provide better care. It draws on a substantial survey of over 500 clinicians, interviews with 16 academic, medical, government and patient experts, and extensive desk research.
In November-December 2019, The Economist Intelligence Unit surveyed 503 healthcare professionals across five Asia-Pacific markets to gauge their understanding of rare diseases and identify the challenges faced by national health systems. Respondents comprised currently practicing specialist physicians (n=172), general practitioners (n=229), nurses (n=40) and pharmacists (n=62). Markets included were Australia (n=103), China (n=100), Japan (n=100), South Korea (n=100) and Taiwan (n=100).
In addition, in-depth contextualising interviews were conducted with 16 expert representatives of clinical practice and patient organisations to inform our research programme and this report. Our sincerest thanks go to the following for their time and insight:
Takeya Adachi, program officer, Agency for Medical Research and Development, Japan
Younjhin Ahn, Division of Rare Diseases, Korean National Institute of Health Centre for Biomedical Sciences, South Korea
Matthew Bellgard, professor and director of eResearch, Queensland University of Technology, Australia and chair of the Asia Pacific Economic Cooperation (APEC) Rare Disease Network, Australia
Gareth Baynam, clinical geneticist and director of the Undiagnosed Diseases Program Genetic Services of Western Australia, Australia
Dong Dong, research assistant professor, Chinese University of Hong Kong, Hong Kong SAR
Elizabeth Elliott, professor of Paediatrics and Child Health, University of Sydney, Australia
Kevin Huang, founder, Chinese Organization for Rare Disorders, China
Ritu Jain, president, Asia-Pacific Alliance of Rare Disease Organisation, Singapore
Sonoko Misawa, associate professor, Chiba University Graduate School of Medicine, Japan
Yukiko Nishimura, founder and president, NPO ASrid (Advocacy Service for Rare and Intractable Diseases’ Multi-Stakeholders in Japan)
Min-Chieh Tseng, co-founder, Taiwan Foundation for Rare Diseases, Taiwan
Gregory Vijayendran, chair, Rainbow Across Borders
Richard Vines, chair, Rare Cancers Australia, Australia
Jiaan-Der Wang, director of the Centre for Rare Diseases and Haemophilia, Taichung
Veterans General Hospital, Taiwan
Yi’ou Wang, secretary-general, Illness Challenge Foundation, China
Chao-Chun Wu, deputy director general, Health Promotion Administration Taiwan
This research project was sponsored by CSL Behring. This report was written by Paul Kielstra and edited by Jesse Quigley Jones of The Economist Intelligence Unit.
Other language versions:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in Ja...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in Ta...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Taiwan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Taiwan comprised general practitioners or primary care physicians (46%), specialist physicians (34%), nurses (10%) and pharmacists (10%). Respondents were split between private (54.0%) and public (21%) or teaching
healthcare institutions (25%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in As...
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.
This Economist Intelligence Unit study, sponsored by CSL Behring, looks at the nature of the rare disease challenge in the region, how prepared five of its economies are to face it, and reviews the initiatives aiming to provide better care. It draws on a substantial survey of over 500 clinicians, interviews with 16 academic, medical, government and patient experts, and extensive desk research.
In November-December 2019, The Economist Intelligence Unit surveyed 503 healthcare professionals across five Asia-Pacific markets to gauge their understanding of rare diseases and identify the challenges faced by national health systems. Respondents comprised currently practicing specialist physicians (n=172), general practitioners (n=229), nurses (n=40) and pharmacists (n=62). Markets included were Australia (n=103), China (n=100), Japan (n=100), South Korea (n=100) and Taiwan (n=100).
In addition, in-depth contextualising interviews were conducted with 16 expert representatives of clinical practice and patient organisations to inform our research programme and this report. Our sincerest thanks go to the following for their time and insight:
Takeya Adachi, program officer, Agency for Medical Research and Development, Japan
Younjhin Ahn, Division of Rare Diseases, Korean National Institute of Health Centre for Biomedical Sciences, South Korea
Matthew Bellgard, professor and director of eResearch, Queensland University of Technology, Australia and chair of the Asia Pacific Economic Cooperation (APEC) Rare Disease Network, Australia
Gareth Baynam, clinical geneticist and director of the Undiagnosed Diseases Program Genetic Services of Western Australia, Australia
Dong Dong, research assistant professor, Chinese University of Hong Kong, Hong Kong SAR
Elizabeth Elliott, professor of Paediatrics and Child Health, University of Sydney, Australia
Kevin Huang, founder, Chinese Organization for Rare Disorders, China
Ritu Jain, president, Asia-Pacific Alliance of Rare Disease Organisation, Singapore
Sonoko Misawa, associate professor, Chiba University Graduate School of Medicine, Japan
Yukiko Nishimura, founder and president, NPO ASrid (Advocacy Service for Rare and Intractable Diseases’ Multi-Stakeholders in Japan)
Min-Chieh Tseng, co-founder, Taiwan Foundation for Rare Diseases, Taiwan
Gregory Vijayendran, chair, Rainbow Across Borders
Richard Vines, chair, Rare Cancers Australia, Australia
Jiaan-Der Wang, director of the Centre for Rare Diseases and Haemophilia, Taichung
Veterans General Hospital, Taiwan
Yi’ou Wang, secretary-general, Illness Challenge Foundation, China
Chao-Chun Wu, deputy director general, Health Promotion Administration Taiwan
This research project was sponsored by CSL Behring. This report was written by Paul Kielstra and edited by Jesse Quigley Jones of The Economist Intelligence Unit.
Other language versions:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in Ta...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Taiwan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Taiwan comprised general practitioners or primary care physicians (46%), specialist physicians (34%), nurses (10%) and pharmacists (10%). Respondents were split between private (54.0%) and public (21%) or teaching
healthcare institutions (25%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in So...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from South Korea, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from South Korea comprised general practitioners or primary care physicians (45%), specialist physicians (35%), nurses (10%) and pharmacists (10%). Respondents reported working in predominantly private (58%) and public (12%) or teaching healthcare institutions (25%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in As...
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.
This Economist Intelligence Unit study, sponsored by CSL Behring, looks at the nature of the rare disease challenge in the region, how prepared five of its economies are to face it, and reviews the initiatives aiming to provide better care. It draws on a substantial survey of over 500 clinicians, interviews with 16 academic, medical, government and patient experts, and extensive desk research.
In November-December 2019, The Economist Intelligence Unit surveyed 503 healthcare professionals across five Asia-Pacific markets to gauge their understanding of rare diseases and identify the challenges faced by national health systems. Respondents comprised currently practicing specialist physicians (n=172), general practitioners (n=229), nurses (n=40) and pharmacists (n=62). Markets included were Australia (n=103), China (n=100), Japan (n=100), South Korea (n=100) and Taiwan (n=100).
In addition, in-depth contextualising interviews were conducted with 16 expert representatives of clinical practice and patient organisations to inform our research programme and this report. Our sincerest thanks go to the following for their time and insight:
Takeya Adachi, program officer, Agency for Medical Research and Development, Japan
Younjhin Ahn, Division of Rare Diseases, Korean National Institute of Health Centre for Biomedical Sciences, South Korea
Matthew Bellgard, professor and director of eResearch, Queensland University of Technology, Australia and chair of the Asia Pacific Economic Cooperation (APEC) Rare Disease Network, Australia
Gareth Baynam, clinical geneticist and director of the Undiagnosed Diseases Program Genetic Services of Western Australia, Australia
Dong Dong, research assistant professor, Chinese University of Hong Kong, Hong Kong SAR
Elizabeth Elliott, professor of Paediatrics and Child Health, University of Sydney, Australia
Kevin Huang, founder, Chinese Organization for Rare Disorders, China
Ritu Jain, president, Asia-Pacific Alliance of Rare Disease Organisation, Singapore
Sonoko Misawa, associate professor, Chiba University Graduate School of Medicine, Japan
Yukiko Nishimura, founder and president, NPO ASrid (Advocacy Service for Rare and Intractable Diseases’ Multi-Stakeholders in Japan)
Min-Chieh Tseng, co-founder, Taiwan Foundation for Rare Diseases, Taiwan
Gregory Vijayendran, chair, Rainbow Across Borders
Richard Vines, chair, Rare Cancers Australia, Australia
Jiaan-Der Wang, director of the Centre for Rare Diseases and Haemophilia, Taichung
Veterans General Hospital, Taiwan
Yi’ou Wang, secretary-general, Illness Challenge Foundation, China
Chao-Chun Wu, deputy director general, Health Promotion Administration Taiwan
This research project was sponsored by CSL Behring. This report was written by Paul Kielstra and edited by Jesse Quigley Jones of The Economist Intelligence Unit.
Other language versions:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in Au...
In November-December 2019, The Economist Intelligence Unit surveyed 103 practising healthcare professionals from Australia, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Australia comprised general practitioners or primary care physicians (45.5%), specialist physicians (34.2%), nurses (8.0%) and pharmacists (12.3%). Respondents predominately worked in private (49.7%) and public or teaching healthcare institutions (46.5%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Suffering in silence: Assessing rare disease awareness and management in Ja...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
Full reports:
Snapshots:
Australia | China | Japan | Korea | Taiwan
无声的苦难：中国大陆罕见病的认知与管理评估
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
無聲的苦難：評估台灣對於罕見疾病之認知與管理
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
Around a quarter of heart attack or stroke patients in Asia-Pacific are re-hospitalised with a follow-on event, according to The Economist Intelligence Unit
Around a quarter of heart attack or stroke patients in Asia-Pacific are re-hospitalised with a follow-on event, according to The Economist Intelligence Unit
The cost of inaction: Secondary prevention of cardiovascular disease in Asi...
The burden of cardiovascular disease (CVD) across Asia-Pacific varies by country, but is nonetheless substantial. Collectively CVD is the leading or second-leading cause of death across the region and the prevalence continues to rise. Further, shifting demographics in the region—with both an increase in younger people experiencing CVD and ageing populations with multiple comorbidities—are putting health systems under increasing pressure.
Progress in tackling the problems associated with CVD has focussed in the primary prevention space, and age-standardised incidence of CVDs are beginning to fall. However, undermining this progress, there is still an unacceptably high recurrence rate of heart attack and stroke with associated economic and human cost. As more patients now survive an initial heart attack or stroke, the secondary event burden is likely to increase. This demands urgent attention but also represents an eminently realisable opportunity to improve care and outcomes in this group.
This analysis by the Economist Intelligence Unit explores the policy response to managing secondary cardiovascular events in eight Asia-Pacific economies: Australia, mainland China, Hong Kong, Japan, Singapore, South Korea, Taiwan and Thailand.
Key findings of the research include:
While CVD policies do exist, some are more comprehensive than others.
The success of translating policy on modifiable risk factors into legislation and action, along with measuring impact, is yet to be defined.
Government audits are lacking.
Primary care systems, a key component for integrated care, are evolving.
Rehabilitation services exist but coverage is limited, and they struggle to recruit and retain patients.
Integrated, coordinated patient-centred care is a necessary goal.
Patient empowerment is essential for success.
Maximising data and measuring progress.
The Cost of Silence: Cardiovascular disease in Asia
The Cost of Silence: Cardiovascular disease in Asia is a report by The Economist Intelligence Unit and EIU Healthcare. It provides a study of the economic impact of CVD risk factors on the following Asian markets: China, Australia, Hong Kong, Japan, Singapore, South Korea, Taiwan and Thailand.
Specifically, the study captures the cost of ischaemic heart disease (IHD) and stroke. IHD, also called coronary heart disease (CHD) or coronary artery disease, is the term given to heart problems caused by narrowed heart (coronary) arteries that supply blood to the heart muscle, which can lead to stable angina, unstable angina, myocardial infarctions or heart attacks, and sudden cardiac death. Stroke is characterised by the sudden loss of blood circulation to an area of the brain due to blockage of brain vessels, or a haemorrhage or blood clot.
This study further combines an evidence review of existing research on CVDs and primary research in the form of expert interviews.
Key findings of the report are as follow:
The rising incidence of CVD poses a substantial challenge to Asia-Pacific markets
The four main modifiable cardiovascular risk factors pose a communications challenge for governments and health agencies.
Hypertension is the risk factor that contributes the highest cost.
The costs of CVDs are not fixed. Greater awareness and policymaker attention can substantially reduce CVD costs as many obstacles and corresponding solutions have been identified as effective.
Policy options for primary prevention include choice “nudges”.
Effective secondary prevention can also significantly affect costs and outcomes.
아시아 태평양 지역의 심혈관 질환(CVD)부담은 국가별로 상이하나 모두 상당하다.CVD는 지역 전반에서 사망 원인 1위 또는2위를 차지하고 있으며, 유병률도 계속높아지고 있다. 또한 CVD를 경험하는 젊은환자와 여러 동반 이환을 가진 고령화 인구두 집단 모두의 증가라는 지역 내 인구통계적변화로 인해 각국의 보건의료체계에 부하가걸리고 있다.
CVD 관련 문제 해결에 관한 진척은 1차예방 분야에 초점이 맞춰져 이루어져왔으며, CVD의 연령표준화 발생률은감소하기 시작했다. 그러나 여전히 허용할수 없는 높은 수준의 심장마비 및 뇌졸중재발률과 그에 따른 경제적 및 인적 비용이존재해 이러한 진척을 저해하고 있다. 첫심장마비 또는 뇌졸중 생존자가 더많아짐에 따라 2차 사건 관련 부담이증가할 가능성이 높다. 이는 긴급한 주의를요구하는 상황인 동시에, 해당 환자 집단의관리와 결과를 개선할 수 있는 탁월하고현실적인 기회이기도 하다.
본 이코노미스트 인텔리전스 유닛분석에서는 아시아 태평양 지역8개국(호주, 중국, 홍콩, 일본, 싱가포르,한국, 대만, 태국)의 2차 심혈관 사건관리에 대한 정책적 대응을 살펴본다.
본 연구의 주요 결과는 다음을 포함한다.
관련 정책은 확실히 존재하나, 정책이상당히 포괄적인 국가도 있고 그렇지 않은국가도 있다.
조절 가능한 위험인자에 대한 정책을 법률과실천에 성공적으로 반영했는지 여부와 그로인한 영향은 아직 확인되지 않았다.
정부 감사가 결여되어 있다.
통합 관리의 핵심 요소인 1차 의료 체계가발전하고 있다.
재활 서비스가 존재하나 보장 범위가제한적이며, 업체들은 환자 유치와 유지에어려움을 겪고 있다.
필요한 목표는 환자 중심의 통합적이고조정된 관리
환자 권한부여는 성공의 핵심
데이터 극대화 및 진척도 측정
Data and digital technologies to improve clinical outcomes for high-risk ca...
Cardiovascular diseases (CVD) account for around one quarter of deaths in Australia.1 The Economist Intelligence Unit estimates that the annual direct and indirect costs of CVD in Australia totals US$12.3bn.2 There are numerous modifiable risk factors for CVD, but the most important include hypertension (high blood pressure), high cholesterol, tobacco use, diabetes and obesity.3 While much of the recent focus has been on primary prevention through lifestyle modification, those highrisk patients with existing CVD—such as peripheral artery disease or a previous heart attack or stroke—require particular attention to avoid further morbidity and mortality.
The improved use of data and digital health tools has the potential to enable more coordinated and patient-centred models of care. The Digital Health CRC takes this further in saying “research and innovation in digital health offers Australia significant economic and business development opportunities, as well as great promise for the better health of our community”.4
On 27 May 2020, The Economist Intelligence Unit—supported by the Australian Cardiovascular Alliance (ACvA) and Digital Health CRC and with sponsorship from Amgen—convened a virtual roundtable discussion with 25 representatives from across the Australian cardiovascular healthcare landscape.
Co-hosted by the Economist Intelligence Unit with Dr Gemma Figtree, president of ACvA and professor in medicine at University of Sydney & Royal North Shore Hospital, and Dr Tim Shaw, director of research and workforce capacity at Digital Health CRC, the roundtable aimed to identify barriers, challenges and opportunities to improve outcomes for highrisk CVD patients by improving the use of data and digital technologies.
1 Australian Institute of Health and Welfare. Cardiovascular disease. In: Welfare AIoHa, editor. Canberra 2019.
2 Economist Intelligence Unit. “The cost of silence: Cardiovascular disease in Asia”, 2019
3 Centers for Disease Control and Prevention. “Know your risk for heart diseases”. Available from: https://www.cdc.gov/heartdisease/risk_factors.htm
(Accessed Jun 2020).
4 Digital Health CRC. “About us”. Available from: https://www.digitalhealthcrc.com/about-us/ (Accesed Jun 2020).
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.
Financing sustainability: Asia Pacific embraces the ESG challenge
Financing sustainability: Asia Pacific embraces the ESG challenge is an Economist Intelligence Unit report, sponsored by Westpac. It explores the drivers of sustainable finance growth in Asia Pacific as well as the factors constraining it. The analysis is based on two parallel surveys—one of investors and one of issuers—conducted in September and October 2019.
If the countries of Asia Pacific are to limit the negative environmental effects of continued economic growth, and companies in the region are to mitigate their potential climate risks and make a positive business contribution through improving the environment and meeting the UN's Sustainable Development Goals (SDGs), large volumes of investment in sustainable projects and businesses need to be mobilised. A viable sustainable finance market is taking shape in the region to channel commercial investor funds, and both investors and issuers say they are achieving a financial benefit from their investment and financing activities. The market is still in the early stages of development, however, and must expand and mature to meet investor needs.
The chief constraint on sustainable finance growth in the region has been the limited supply of bankable sustainable projects. Our research suggests supply is increasing, but with investor demand continuing to grow apace, the gap will remain an obstacle in the short- to medium-term. Among the organisations in our issuer survey, only 7% have used sustainable finance instruments to fund projects. However, nearly nine in ten (87%) said they intend to do so in the next year, which should begin to bridge the gap between supply and demand.
Based on issuers’ stated intentions, investors will have a range of instruments to choose from, including green loans and bonds and sustainability loans and bonds. Large numbers of investors indicate that they intend to deploy a greater proportion of capital to these over the next three years.
What is driving the strong demand for financing sustainability in Asia Pacific? How can companies increase supply and start to see the benefits of sustainable finance in the next three years? We interviewed Richard Brandweiner, CEO of Pendal Australia, and Sophia Cheng, CIO of Cathay Financial Holdings and chair of Asia Investor Group on Climate Change, to find out.
Enjoy in-depth insights and expert analysis - subscribe to our Perspectives newsletter, delivered every week
Newsletter Signup
The Economist Group is a global organisation and operates a strict privacy policy around the world. Please see our privacy policy here
Join our Opinion Leaders Panel
Complete the form to join our panel and receive rewards every time you complete our business surveys. You will also receive the weekly newsletter, containing the latest cutting edge reports, blogs and industry data.
The Economist Intelligence Unit is part of the Economist Group. The Economist Group is a global organisation and operates a strict privacy policy around the world. To read more about us and our privacy policy please go to http://www.economistgroup.com/privacy
