Analyzing Health System Resilience From the Perspective of Rare Diseases

ABSTRACT

Objectives: Health systems resilience (HSR) is generally understood as the capacity to absorb, adapt or transform in order to maintain essential functions when faced shocks. Following the COVID-19 pandemic, the concept of HSR has gained popularity, and there is now greater recognition of the importance of HSR among healthcare professionals and policymakers. A deep understanding of factors affecting HSR and practical strategies to achieve it, is still a matter of debate. Therefore, the present study aims at exploring HSR in the field of rare diseases, a vulnerable group exhibiting unique demands and particular requirements for ongoing care. Method(s) By a scoping review of the literature, we identified 53 characteristics relevant toHSR. by classifying characteristics according to the WHO building blocks, we developed a survey directed to healthcare professionals dealing with rare diseases. The survey aims to understand to which extent each characteristic matters for achieving HSR in this context. After the preliminary development of the survey, comprehensiveness and clarity were assessed, sharing the survey with a restricted group of experts working and not with rare diseases. Based on their feedback, the survey was revised and. Result(s) Feedback from the restricted groups was generally positive, and minimal changes were introduced to improve the clarity of the survey and to include specific questions in addition to characteristics found in the literature review (i.e., the importance of being part of a large network dealing with a rare disease). The survey was implemented online and then shared using social media and directly mailing the link to an expert in the treatment of rare diseases. Conclusion(s) We expect to figure out a comprehensive set of characteristics that are appropriate to define resilience in the context of rare diseases. Our framework will help to suggest strategies to deal with shocks within such a context effectively. Copyright © 2022