Table 4 Quotes from rare disease organisation representatives from focus group meeting and post-meeting feedback: digitalisation of health and operation

Australia

“Many chose to restrict using health and other public services. However, many health services have been rapidly shifted to use telemedicine which certainly helps.”

HKSAR China

“The organisation feels the need to move more of their services online. More webinars and annual general meetings are moving online. Some NGOs are pushing rehabilitation programmes for the elderly online, but the organisation is still working on that for Rare Disease patients.”

Japan

“The number of patients who receive regular medical examinations for chronic diseases has been extended to include online medical services through telephone calls to doctors and other means, so that patients can receive their prescriptions at the pharmacy of their choice without having to visit a hospital.”

Malaysia

“We launched our tele-physio programme, everything was pulled together and run virtually. It’s successful and moving to Phase II. What's interesting is that the movement restrictions etc. has taught us quickly to operate a lot more virtually and effectively, to the extent that we decided we no longer need a permanent office and in the process of shifting to flexible shared office and storage, and home-office arrangements, which also saves overhead costs.”

“All stakeholders (are) a lot more open and willing, and (are) more available and timely, to be on digital channels.”

New Zealand

“Due to COVID, a major benefit is that we have moved to a new mode of healthcare- telehealth, which is the future. Originally, there are lots of barriers to telehealth, such as government regulations and insurance. However, due to COVID, the transition to telemedicine has accelerated, which is beneficial to rare disease patients. As such, this COVID has forced us to move with legal and insurance issues surrounding telehealth. This is also true for allied health services such as physiotherapy or mental health.”