In Hong Kong, 1 in 67 residents live with at least one rare disease, representing 1.5% of the population. Over the world, it is estimated that 263 - 446 million people are affected by at least one rare disease, with a total of 5,000 to 8,000 different types of rare diseases. Although individual rare disease can pose multiple medical and scientific questions, collectively, different rare diseases share three common features: (1) Diagnostic odyssey.  (2) Inaccessible and unaffordable healthcare.  (3) Social stigmas and discrimination. These challenges contribute to the complexity of rare diseases. Under the influence of this complexity, many measures that could accelerate treatment innovation or improve services have become slow, including understanding patient experiences, designing patient registries, conducting natural history research, enabling market access, and providing patient-centred healthcare services for the entire rare disease community.

Although patient advocacy groups are considered to have an innate advantage in bridging multiple stakeholders, the lack of a standardized toolkit to visualize patient journeys has been a constant hindrance to communication, collaboration, and decision-making among these stakeholders. Our solution, a co-created patient journey visualization toolkit, aims to help patient groups (1) build narratives, (2) describe and delineate their experiences with the diagnostic odyssey, barriers from the healthcare and social welfare systems, and socio-psychological burdens resulting from stigmas and discriminations, and (3) make their experiences, thoughts, feelings, and pursuits visible to all stakeholders and the broader society. With this toolkit, rare disease patients and patient groups in Hong Kong will be empowered to voice their perspectives and make better healthcare and social care decisions for themselves.

Through this program, the co-creation process will enable patient groups, physicians, policy makers, and technology providers to come together, exchange roles, develop ideas, co-create, and evaluate a patient journey visualization toolkit. Such co-creation practices will embrace the diversity of rare disease patient journeys and have an immediate effect on creating empathy among participants. We aim to institutionalize this co-creation program and cultivate a patient-centric culture in Hong Kong's healthcare system. From a technological perspective, this program will generate Hong Kong's first open-source digital patient journey visualization toolkit.

• Representatives from different rare disease patient groups


• Independent patients who need to map their own patient journeys


• Medical professionals


• Policy-makers


• Social workers


• Industrial players


• General public

2023

Healthcare, MedTech