People wit bleeding disorder empowerment leads to their involvement in the path of care. Specific culture may influence this concept. Empowerment of people with bleeding disorders makes them active partners in their personal healthcare. To be able to achieve this empowerment, both persons with bleeding and healthcare providers should have an education with understanding of their respective roles, with knowledge of the disease, treatment and available resources.
Empowerment of people with bleeding disorders, is associated with more autonomy, with balanced relationships and collaboration with healthcare professionals. Transparency and more active participation in the path of care will ultimately lead to increase adherence to the treatment care.
Empowerment of people with bleeding disorders is in line with the principles of health democracy which advocate the participation of all stakeholders in the health system in health policy.
The World Federation of Hemophilia supports the education of the different stakeholders. Recently a shared decision-making tool was developed to help people with hemophilia be aware of the different therapeutic options, and be able to be active in the option choice. This tool was designed to facilitate discussions regarding treatment options between people with hemophilia A or B and/or caregivers and their healthcare team, leading to informed decision-making. In absence of different option treatment choice feasibility, this tool will make people with hemophilia aware of the available treatment in the world, and help them to advocate to introduce new treatment in their country.
Learning Objectives:
Shared decision making is the process by which a clinician and a patient jointly make a health decision after discussing options, potential benefits and harms, and considering the patient's values and preferences. For inherited bleeding disorders, this aproach is not applicable elsewhere. Available option treatment and culture may affect this process. Empowerment of people with bleeding disorder will help to achieve the best approach to shared decision making.
