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
ザ・エコノミスト・インテリジェンス・ユニットは、アジア太平洋地域における希少疾患の認知度と患者が直面する課題を検証し、その一環として2019年11〜12月にかけて域内５カ国のアンケート調査を実施した｡同調査の対象には、日本の医療関係者100名も含まれている｡
日本の調査対象者の内訳は、開業医44％・専門医35％・看護師6％・薬剤師14％となっており、その64％は民間医療機関、16％は公的医療機関あるいは医療教育機関に所属している｡
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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 TaiwanThis 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
无声的苦难：中国大陆罕见病的认知与管理评估
在2019年11月至12月期间，经济学人智库(The Economist Intelligence Unit)访问了100名来自中国大陆的医疗机构执业人士，作为亚太地区罕见病认知与挑战分析项目的一部分。
中国大陆的受访者包括全科医生或首诊医生(44%)、专科医生(36%)、护士(6%)和药剂师(14%)。大多数受访者在公立医院工作(74%)，13%在教学医院，8%在私立医院或诊所工作。
Full reports:
Related content
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 TaiwanThis 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
Suffering in silence: Assessing rare disease awareness and management in Taiwan
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:
Related content
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 TaiwanThis 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
Suffering in silence: Assessing rare disease awareness and management in South Korea
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:
Related content
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 TaiwanThis 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
Suffering in silence: Assessing rare disease awareness and management in Japan
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:
Related content
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 TaiwanThis 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:
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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%).
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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 China
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.
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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 TaiwanThis 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.
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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
Suffering in silence: Assessing rare disease awareness and management in Australia
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:
Related content
無聲的苦難： 亞太地區罕見疾病 之認知與管理評估
隨著亞太區打算開始掌控罕見疾病這項社會議題，接下來將面對許多重大且不斷浮現的挑戰需要應對。即便醫療與社會系統在許多層面有相當的進展，但仍存在許多問題有待解決。
本次由CSL Behring公司贊助經濟學人智庫的研究將著眼於亞太地區罕見疾病所面臨的困境、五個經濟體如何準備應對這一挑戰，並回顧各國相關措施如何提供更佳罕見疾病照護。本報告經匯整並分析由500多名臨床醫生的大量調查資料，與16位學術、醫學、政府和罕見疾病專家的訪談，以及廣泛的文案研究。
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)。
此外，我們與16名臨床診治與病友組織的專家代表進行了諮詢或深入情境式訪談而完成了本研究計劃和這份報告。我們誠摯地感謝以下人員的參與及洞見:
Takeya Adachi，國立研究開發法人日本醫療研究開發機構 (AMED) Younjhin Ahn，韓國國立生物醫學科學健康中心 Matthew Bellgard，澳洲昆士蘭科技大學教授兼電子化研究主任、APEC罕見疾病網路主席 Gareth Baynam，西澳臨床遺傳學家和未診斷疾病計畫基因服務主任 董咚，香港中文大學研究助理教授 Elizabeth Elliott，澳洲雪梨大學兒科與兒童健康教授 黃如方，中國罕見病發展中心創始人 Ritu Jain，新加坡罕見疾病組織亞太聯盟主席(APARDO) Sonoko Misawa，日本千葉大學醫學研究院副教授 Yukiko Nishimura，日本多重罕見疾病和難治疾病組織(NPO ASrid)創始人兼主席曾敏傑，台灣罕見疾病基金會共同創辦人 Gregory Vijayendran, 新加坡跨越國界的彩虹主席 Richard Vines，澳洲罕見癌症協會主席王建得，台灣台中榮民總醫院罕見疾病暨血友病中心主任 王奕鷗，中國病痛挑戰基金會秘書長 吳昭軍，台灣衛生福利部國民健康署副署長本研究計畫由CSL Behring公司贊助。本報告由Paul Kielstra撰寫，經濟學人智庫Jesse Quigley Jones 編輯。
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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
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침묵 속의 고통: 아시아태평양 지 역내 희귀질환 인지도 및 질병관 리 현황 평가
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 사무차장본 연구는CSL Behring사의 후원으로이루어졌으며 보고서 작성은 Paul Kielstra (EIU), 편집은 Jesse Quigley Jones(EIU)가 담당하였다.
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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
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アジアにおける希少疾患： 認知度・QoL向上に向けた 課題と取り組み
そうした中で域内諸国は希少疾患がもたらす新旧様々な問題に直面している。医療・社会制度改革を通じた問題への対応が進んでいるものの、依然として効果的対策の模索が続く分野も多い。
ザ・エコノミスト・インテリジェンス・ユニット（EIU）がCSL ベーリングの協賛の下で作成した本報告書では、アジア太平洋地域5 カ国が希少疾患の分野で直面する課題と対応、診療体制の改革に向けた取り組みについて検証する。本報告書の作成に当たっては、医療関係者500名以上を対象としたアンケート調査、学術機関・医療機関・政府関係者・エキスパート患者16名に対する聞き取り調査、そして詳細にわたるデスクリサーチが実施された。
本報告書の作成にあたり、ザ・エコノミスト・インテリジェンス・ユニット（EIU）はアジア太平洋地域5 カ国の医療関係者503名を対象とするアンケート調査を2019 年11 〜12 月にかけて実施した。その目的は、希少疾患の認知レベルを理解し、各国政府が直面する課題を検証することだ。調査対象者の内訳は、専門医172 名、一般開業医229 名、看護師40 名、薬剤師62 名（いずれも現職）。国別の内訳は、オーストラリア103 名、中国100 名、日本100 名、韓国100 名、台湾100 名となっている。
また今回の調査では、医療者・患者団体関係者16 名を対象として、詳細にわたる聞き取り調査も実施した。ご協力をいただいた下記の皆様（アルファベット順に掲載・敬称略）には、この場を借りて御礼申し上げます：
国立研究開発法人 日本医療研究開発機構プログラムオフィサー 足立剛也 韓国国立生物医学医療センター希少疾患部門 Younjhin Ahn クイーンズランド工科大学eResearch 学部 ディレクターAPEC 希少疾患ネットワーク 議長Matthew Bellgard 西オーストラリア遺伝子検査サービスセンター未診断疾患プログラム担当ディレクターGareth Baynam 香港中文大学 準教授 Dong Dong シドニー大学小児科学・児童健康学担当教授Elizabeth Elliott 中国希少疾患協会 創立者 Kevin Huang アジア太平洋希少疾患連合理事長 Ritu Jain 千葉大学医学部附属病院脳神経内科 准教授 三澤園子 特定非営利活動法人 ASrid理事 西村由希子 台湾希少疾患基金共同創立者 Min-Chieh Tseng Rainbow Across Borders議長 Gregory Vijayendran Rare Cancers Australia理事長 Richard Vines 台中栄民総医院希少疾患・血友病センター ディレクターJiaan-Der Wang 疾病挑戦基金 事務局長 Yi'ou Wang 台湾健康増進部 事務次長 Chao-Chun Wu本調査プロジェクトはCSL ベーリングの協賛の下で実施された。報告書の執筆はPaul Kielstra、編集はEIU のJesse Quigley Jones が担当している。
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
無聲的苦難： 亞太地區罕見疾病 之認知與管理評估
無聲的苦難： 亞太地區罕見疾病 之認知與管理評估
隨著亞太區打算開始掌控罕見疾病這項社會議題，接下來將面對許多重大且不斷浮現的挑戰需要應對。即便醫療與社會系統在許多層面有相當的進展，但仍存在許多問題有待解決。
本次由CSL Behring公司贊助經濟學人智庫的研究將著眼於亞太地區罕見疾病所面臨的困境、五個經濟體如何準備應對這一挑戰，並回顧各國相關措施如何提供更佳罕見疾病照護。本報告經匯整並分析由500多名臨床醫生的大量調查資料，與16位學術、醫學、政府和罕見疾病專家的訪談，以及廣泛的文案研究。
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)。
此外，我們與16名臨床診治與病友組織的專家代表進行了諮詢或深入情境式訪談而完成了本研究計劃和這份報告。我們誠摯地感謝以下人員的參與及洞見:
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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.
The Cost of Silence
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.
Download the report to learn more.
침묵 속의 고통: 아시아태평양 지 역내 희귀질환 인지도 및 질병관 리 현황 평가
침묵 속의 고통: 아시아태평양 지 역내 희귀질환 인지도 및 질병관 리 현황 평가
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.
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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 TaiwanThis 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
アジアにおける希少疾患： 認知度・QoL向上に向けた 課題と取り組み
アジアにおける希少疾患： 認知度・QoL向上に向けた 課題と取り組み
そうした中で域内諸国は希少疾患がもたらす新旧様々な問題に直面している。医療・社会制度改革を通じた問題への対応が進んでいるものの、依然として効果的対策の模索が続く分野も多い。
ザ・エコノミスト・インテリジェンス・ユニット（EIU）がCSL ベーリングの協賛の下で作成した本報告書では、アジア太平洋地域5 カ国が希少疾患の分野で直面する課題と対応、診療体制の改革に向けた取り組みについて検証する。本報告書の作成に当たっては、医療関係者500名以上を対象としたアンケート調査、学術機関・医療機関・政府関係者・エキスパート患者16名に対する聞き取り調査、そして詳細にわたるデスクリサーチが実施された。
本報告書の作成にあたり、ザ・エコノミスト・インテリジェンス・ユニット（EIU）はアジア太平洋地域5 カ国の医療関係者503名を対象とするアンケート調査を2019 年11 〜12 月にかけて実施した。その目的は、希少疾患の認知レベルを理解し、各国政府が直面する課題を検証することだ。調査対象者の内訳は、専門医172 名、一般開業医229 名、看護師40 名、薬剤師62 名（いずれも現職）。国別の内訳は、オーストラリア103 名、中国100 名、日本100 名、韓国100 名、台湾100 名となっている。
Related content
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 TaiwanThis 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