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患者活动家还是盟友?评估良心和受益方在疾病倡导筹款中的有效性。

Patient-activist or ally? Assessing the effectiveness of conscience and beneficiary constituents in disease advocacy fundraising.

机构信息

University of California, Los Angeles, Los Angeles, California, USA.

Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.

出版信息

Sociol Health Illn. 2023 Nov;45(8):1652-1672. doi: 10.1111/1467-9566.13655. Epub 2023 May 27.

Abstract

Disease advocacy organisations (DAOs) are critical for raising awareness about illnesses and supporting research. While most studies of DAOs focus on personally affected patient-activists, an underappreciated constituency are external allies. Building from social movement theory, we distinguish between beneficiary constituents (disease patients and their loved ones) and conscience constituents (allies) and investigate their relative fundraising effectiveness. While the former have credibility due to illness experience that should increase fundraising, the latter are more numerous. Our study is also the first to investigate where DAO supporters fundraise-through friendship- versus workplace-based networks-and how this interacts with constituent types. Our large-scale dataset includes 9372 groups (nearly 90,000 participants) active in the 'Movember' campaign, a men's health movement around testicular and prostate cancer. We find robust evidence that groups with more beneficiary constituents raise significantly greater funds per participant. Yet because conscience constituents are more numerous, they raise the majority of total aggregate funds. We also find an interaction effect: beneficiary constituents do better in friendship networks, conscience constituents in workplaces. Our findings bear implications for DAOs, indicating they may benefit by encouraging disease patient families to fundraise through friends, and for external allies to focus requests on workplace networks.

摘要

疾病倡导组织(DAOs)对于提高对疾病的认识和支持研究至关重要。虽然大多数关于 DAOs 的研究都集中在受个人影响的患者活动家身上,但一个被低估的群体是外部盟友。我们从社会运动理论出发,区分受益成员(疾病患者及其亲属)和良心成员(盟友),并研究他们相对的筹款效果。虽然前者由于疾病经验而具有可信度,这应该会增加筹款,但后者的数量更多。我们的研究也是第一个调查 DAO 支持者在哪里通过友谊网络和工作场所网络筹款,以及这如何与成员类型相互作用的研究。我们的大型数据集包括在“Movember”运动(一项针对睾丸癌和前列腺癌的男性健康运动)中活跃的 9372 个团体(近 90000 名参与者)。我们有确凿的证据表明,拥有更多受益成员的团体每个参与者筹集的资金要多得多。然而,由于良心成员的数量更多,他们筹集了大部分总资金。我们还发现了一个交互效应:受益成员在友谊网络中表现更好,良心成员在工作场所表现更好。我们的研究结果对 DAOs 具有启示意义,表明它们可以通过鼓励疾病患者家庭通过朋友筹款,以及外部盟友将请求重点放在工作场所网络上来获益。

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