Centro Nazionale Malattie Rare, Istituto Superiore di Sanità, Rome, Italy.
EURORDIS - Rare Diseases Europe, Paris, France.
Ann Ist Super Sanita. 2019 Jul-Sep;55(3):283-291. doi: 10.4415/ANN_19_03_15.
The notion of empowerment is linked to patients' everyday life and is the base allowing for the patient engagement through which individuals and communities are able to express their needs, are involved in decision-making, take action to meet those needs. In the field of rare diseases, empowerment strategies have greater value due to low prevalence, lack of expertise, poor quality of life. Avenues to patient empowerment are: health literacy and capacity-building; shared decision-making; support to self-management. Patient empowerment is recognised as key enabler in creating sustainability as addressing challenges faced by modern healthcare systems in terms of effectiveness, access and resilience. It is recommended to develop a comprehensive EU roadmap on patient empowerment including specific recommendations, taking stock of good practices. This holistic approach should lead to a society where all actors are fulfilled human beings and unmet needs are addressed in compliance with fundamental human rights.
赋权的概念与患者的日常生活息息相关，是使患者参与其中的基础，通过这种参与，个人和社区能够表达自己的需求，参与决策，并采取行动满足这些需求。在罕见病领域，由于患病率低、专业知识匮乏、生活质量差，赋权策略具有更大的价值。增强患者权能的途径包括：提高健康素养和能力建设；共同决策；支持自我管理。患者赋权被认为是创造可持续性的关键因素，因为它解决了现代医疗保健系统在有效性、可及性和弹性方面面临的挑战。建议制定一项全面的欧盟患者赋权路线图，包括具体建议，评估良好做法。这种整体方法应该导致一个所有行为者都是充分发挥其潜力的人的社会，满足所有人的未满足需求，并符合基本人权。
