Claudia Ching Yan Chung1, Yvette Nga Chung Ng1, Ritu Jain2,3, Brian Hon Yin Chung4. 1. Department of Paediatrics and Adolescent Medicine, The University of Hong Kong, Hong Kong, Hong Kong SAR. 2. Asia Pacific Alliance of Rare Disease Organisations, Singapore, Singapore. ritujain@ntu.edu.sg. 3. Nanyang Technological University, Singapore, Singapore. ritujain@ntu.edu.sg. 4. Department of Paediatrics and Adolescent Medicine, The University of Hong Kong, Hong Kong, Hong Kong SAR. bhychung@hku.hk.
Abstract
BACKGROUND: This study assesses the areas and extent of impact of the Coronavirus Disease of 2019 (COVID-19) pandemic on rare disease (RD) organisations in the Asia Pacific region. There is no existing literature that focuses on such impact on RD organisations in any jurisdictions, nor RD populations across multiple jurisdictions in the Asia Pacific region. A cross-sectional survey was distributed to RD organisations between April and May 2020. Quantitative and qualitative data on the impact of COVID-19 on RD organisations and patients were collected from the organisation representative's perspective. Qualitative data was analysed using thematic analysis. A follow-up focus group meeting was conducted in August 2020 to validate the survey findings and to discuss specific needs, support and recommendations for sustainable healthcare systems during the pandemic. RESULTS: A total of 80 RD organisations from Australia, Hong Kong Special Administrative Region of China, India, Japan, mainland China, Malaysia, New Zealand, the Philippines, Singapore and Taiwan participated in the study. Of all, 89% were concerned about the impact of pandemic on their organisations. Results indicate that 63% of the organisations functioned at a reduced capacity and 42% stated a decrease in funding as their biggest challenge. Overall, 95% believed their patients were impacted, particularly in healthcare access, social lives, physical health, psychological health and financial impact. Specifically, 43% identified the reduced healthcare access as their top impact, followed by 26% about the impact on daily living and social life. Focus group meeting discussed differential impact across jurisdictions and point towards telemedicine and digitalisation as potential solutions. CONCLUSIONS: This serves as the first study to assess the impact of COVID-19 on RD patients and organisations across multiple jurisdictions in the Asia Pacific region, identifying major themes on the impact on both RD patients and organisations. By including 80 organisations from ten jurisdictions, our study presents the most comprehensive assessment of the pandemic's impact to date. It highlights the need for mental health support and sheds light on moving towards telemedicine and digitalisation of organisation operation, which constitutes a sustainable model in times of pandemics and beyond.
BACKGROUND: This study assesses the areas and extent of impact of the Coronavirus Disease of 2019 (COVID-19) pandemic on rare disease (RD) organisations in the Asia Pacific region. There is no existing literature that focuses on such impact on RD organisations in any jurisdictions, nor RD populations across multiple jurisdictions in the Asia Pacific region. A cross-sectional survey was distributed to RD organisations between April and May 2020. Quantitative and qualitative data on the impact of COVID-19 on RD organisations and patients were collected from the organisation representative's perspective. Qualitative data was analysed using thematic analysis. A follow-up focus group meeting was conducted in August 2020 to validate the survey findings and to discuss specific needs, support and recommendations for sustainable healthcare systems during the pandemic. RESULTS: A total of 80 RD organisations from Australia, Hong Kong Special Administrative Region of China, India, Japan, mainland China, Malaysia, New Zealand, the Philippines, Singapore and Taiwan participated in the study. Of all, 89% were concerned about the impact of pandemic on their organisations. Results indicate that 63% of the organisations functioned at a reduced capacity and 42% stated a decrease in funding as their biggest challenge. Overall, 95% believed their patients were impacted, particularly in healthcare access, social lives, physical health, psychological health and financial impact. Specifically, 43% identified the reduced healthcare access as their top impact, followed by 26% about the impact on daily living and social life. Focus group meeting discussed differential impact across jurisdictions and point towards telemedicine and digitalisation as potential solutions. CONCLUSIONS: This serves as the first study to assess the impact of COVID-19 on RD patients and organisations across multiple jurisdictions in the Asia Pacific region, identifying major themes on the impact on both RD patients and organisations. By including 80 organisations from ten jurisdictions, our study presents the most comprehensive assessment of the pandemic's impact to date. It highlights the need for mental health support and sheds light on moving towards telemedicine and digitalisation of organisation operation, which constitutes a sustainable model in times of pandemics and beyond.
Authors: Jedrek Wosik; Marat Fudim; Blake Cameron; Ziad F Gellad; Alex Cho; Donna Phinney; Simon Curtis; Matthew Roman; Eric G Poon; Jeffrey Ferranti; Jason N Katz; James Tcheng Journal: J Am Med Inform Assoc Date: 2020-06-01 Impact factor: 4.497
Authors: Johan A Oldekop; Rory Horner; David Hulme; Roshan Adhikari; Bina Agarwal; Matthew Alford; Oliver Bakewell; Nicola Banks; Stephanie Barrientos; Tanja Bastia; Anthony J Bebbington; Upasak Das; Ralitza Dimova; Richard Duncombe; Charis Enns; David Fielding; Christopher Foster; Timothy Foster; Tomas Frederiksen; Ping Gao; Tom Gillespie; Richard Heeks; Sam Hickey; Martin Hess; Nicholas Jepson; Ambarish Karamchedu; Uma Kothari; Aarti Krishnan; Tom Lavers; Aminu Mamman; Diana Mitlin; Negar Monazam Tabrizi; Tanja R Müller; Khalid Nadvi; Giovanni Pasquali; Rose Pritchard; Kate Pruce; Chris Rees; Jaco Renken; Antonio Savoia; Seth Schindler; Annika Surmeier; Gindo Tampubolon; Matthew Tyce; Vidhya Unnikrishnan; Yin-Fang Zhang Journal: World Dev Date: 2020-06-20