“小马拉大车”:“罕见病”社会组织如何拉动政府、市场与社会救助力量——以北京市M脊髓性肌萎缩症关爱中心为例被引量：1

"A pony pulls the heavy cart":how can rare disease social organizations obtain assistance resources from government,market and social sectors--a case study of Beijing M spinal muscular atrophy care center

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摘要在罕见病救助领域,社会组织为满足专业救助需求,往往承担超出自身组织资源承载能力的救助工作,面临“小马拉大车”的难题。以北京市M脊髓性肌萎缩症关爱中心为例,从注意力竞争和协同治理的视角,研究罕见病社会组织突破自身资源限制,拉动政府、市场、社会的救助力量实现救助目标的机制路径,结果发现:一方面,社会组织通过“自下而上”的注意力竞争路径,主动打造患者平台,在此基础上通过注意力获取机制和维系机制来获取资源和权益;另一方面,社会组织通过联动“政企社医”路径,以救助和服务患者为核心,实现资源整合并赋能患者。在构建综合救助保障体系的过程中,政府应加强对社会组织的资源倾斜,提高其自主性;社会组织应准确识别被救助群体的特点,并选择适当的合作策略,推动多方救助主体间的高效协作。 In the field of rare disease assistance,social organizations often undertake rescue work beyond their own organizational resource capacity to meet professional rescue needs,facing the dilemma of"a pony pulling a heavy cart".Taking the Beijing M Spinal Muscular Atrophy Care Center as an example,this paper studies the mechanism and path by which rare disease assistance social organizations breaks through its own resource limitations,and mobilizes government,market,and social sectors to achieve rescue goals from the perspectives of attention competition and collaborative governance.On the one hand,social organizations actively create patient platforms through a"bottom-up"attention competition path,and on this basis,they obtain resources and rights and interests through attention acquisition mechanisms and maintenance mechanisms.On the other hand,social organizations take rescuing and serving patients as the core,integrate resources and empower patients through a path of linking"government,enterprises,society,and medical institutions".In the process of building the comprehensive assistance security system,the government should strengthen the resource inclination of social organizations and increase their autonomy.Social organizations should accurately identify the characteristics of the rescued groups,and choose appropriate cooperation strategies to promote the efficient cooperation of multi-parties.

作者吴健孙曼曼张平唐贤兴 WU Jian;SUN Manman;ZHANG Ping;TANG Xianxing

机构地区复旦大学国际关系与公共事务学院

出处《社会保障研究》 CSSCI 北大核心 2024年第5期93-103,共11页 Social Security Studies

基金国家自然科学基金重点项目(72234001) 国家自然科学基金面上项目(72474050) 广东省教育厅项目(2021WTSCX065) 广州市社科项目(2022GZGJ11) 广东省基础与应用基础研究项目(2022A1515110541) 广东省社科项目(GD23XYJ33) 教育部人文社科青年项目(24YJC630088)的阶段性成果。

关键词罕见病社会组织社会救助注意力竞争联动“政企社医” rare diseases social organizations social assistance attention competition linking"government enterprises society and medical institutions"