我国罕见病患者组织社会功能发挥状况研究

Research on the Development of Social Functioning of Rare Disease Patient Organizations in China

我国罕见病患者组织发展迅速,社会影响力快速增长,但其动员社会资源,提供患者服务,多方协调、推动政策制定与落地的社会功能发挥仍不充分。究其原因,罕见病患者组织面临社会公众认知、企业资金支持和激励政策的不足,组织内部临床和管理专业人才匮乏,对临床研究和合作重要性的认识不充分等多重障碍。因此,应鼓励患者组织参与政策制定过程,完善国家级罕见患者组织交流平台建设,规范组织运营管理模式,利用数字化工具搭建多方沟通桥梁,鼓励患者组织参与政府决策过程,以期更好地发挥我国罕见病患者组织的社会功能。

Rare disease patient organizations(RDPOs)in China have experienced rapid development and a fast-growing social influence.However,their ability to mobilize social resources,provide patient services,engage in multi-party coordination,and drive policy formulation and implementation still remains insufficient.The main reasons for this are the insufficient social public awareness,inadequate corporate funding support and incentive policies,scarcity of clinical and managerial professionals within the organizations,and insufficient understanding of the importance of clinical research and collaboration.Therefore,this paper suggests encouraging RDPOs to participate in the policy-making process,improving the construction of national-level communication platforms for RDPOs,standardizing organizational operational and management models,utilizing digital tools to establish multi-party communication channels,and encouraging RDPOs to participate in the policy-making process,so as to better fulfill the social functioning of RDPOs in China.