PO.SHP01.02 · 科学与健康政策
优化对患者/幸存者及社区支持者的外展与参与以减轻癌症负担
Optimization of outreach and engagement of patients/survivors and community supporters to reduce the cancer burden
作者与单位 Authors & Affiliations
摘要 Abstract
中文摘要
引言
前列腺癌、肺癌和胰腺癌导致的癌症死亡在低收入社区中仍然最高。幸存者和照护者报告称，这些损失不仅源于疾病本身，还源于在沟通、信任、可及性和文化相关信息方面的缺口。他们的亲身经历对于制定解决方案至关重要。CaRE2 Health Center将患者和幸存者视为合作伙伴，他们的洞见确保科学进展惠及受影响最深的人群。
流程
为提升患者的引领作用，CaRE2 Community Outreach Core（CaRE2-COC）采用了一种由佛罗里达-加利福尼亚三机构社区咨询委员会（CAC）指导的参与模式。这个由13名成员（主要为幸存者和照护者）组成的CAC每季度召开会议，以确定优先事项并确保研究反映患者需求。两个培训项目——Community Supporters Academy（CSA）和为期10周的Community Scientists Research Academy（CSRA）——培养癌症知识、研究素养和倡导技能，使参与者能够指导研究并带动他人参与。他们共同创作文化上量身定制的材料，并在社区活动和线上分发。一个社区联系登记册追踪参与研究、临床试验和生物样本捐赠的意愿；对生物样本的接受度较低促使制作了一段患者友好型的生物样本库视频。合作伙伴关系、一档播客和公共活动扩大了幸存者分享故事和获取信息的机会。
结果
CAC确保患者和幸存者的视角指导CaRE2-COC的各项项目。自2019年以来，CSA已培训了150名大使，80名社区科学家完成了CSRA并获得津贴以牵头本地项目。前后评估显示了各项提升，包括与其他幸存者互动的信心增强以及癌症筛查知识的改善。一场癌症社区大会覆盖了527名参与者，5000名社区成员收到了量身定制的教育材料。登记册数据显示填写调查问卷的意愿强烈，但对生物样本的接受度较低，进一步凸显了宣教需求。幸存者故事播客触达了240名听众，社交媒体互动超过28,000次曝光。诸如与Orlando Magic合作等活动将癌症信息带入了受信任的社区空间。
结论
CaRE2-COC通过确保患者、幸存者和社区的经历指导沟通与研究优先事项，加强了他们的引领作用。通过培训受信任的影响者，并将参与嵌入筛查、预防和研究之中，CaRE2-COC构建了更强大的社区-学术合作伙伴关系，提高了研究参与度，并推进其在加利福尼亚州和佛罗里达州减轻癌症负担的使命。
查看英文原文 English abstract
Introduction
Cancer deaths from prostate, lung, and pancreatic cancers remain highest in low-income communities. Survivors and caregivers report that these losses stem not only from disease, but from gaps in communication, trust, access, and culturally relevant information. Their lived experiences are essential for shaping solutions. The CaRE2 Health Center views patients and survivors as partners whose insights ensure scientific progress reaches those most affected.
Procedures
To elevate patient leadership, the CaRE2 Community Outreach Core (CaRE2-COC) uses an engagement model guided by a Florida-California Tri-Institutional Community Advisory Committee (CAC). The 13-member CAC-largely survivors and caregivers-meets quarterly to set priorities and ensure research reflects patient needs. Two training programs, the Community Supporters Academy (CSA) and the 10-week Community Scientists Research Academy (CSRA), build cancer knowledge, research literacy, and advocacy skills so participants can guide research and engage others. They co-create culturally tailored materials distributed at community events and online. A Community Contact Registry tracks willingness to join research, clinical trials, and biospecimen donation; low biospecimen comfort prompted creation of a patient-friendly biorepository video. Partnerships, a podcast, and public events expand opportunities for survivors to share stories and access information.
Results
The CAC ensures patient and survivor perspectives guide CaRE2-COC programs. Since 2019, the CSA has trained 150 ambassadors, and 80 community scientists completed the CSRA with stipends to lead local projects. Pre/post assessments show gains including increased confidence engaging other survivors and improved cancer-screening knowledge. A Cancer Community Conference reached 527 participants, and 5,000 community members received tailored educational materials. Registry data show strong willingness to complete surveys but lower biospecimen comfort, reinforcing education needs. The survivor-story podcast reached 240 listeners, and social media engagement exceeded 28,000 impressions. Events such as an Orlando Magic partnership brought cancer information into trusted community spaces.
Conclusions
CaRE2-COC strengthens patient, survivor, and community leadership by ensuring their experiences guide communication and research priorities. By training trusted influencers and embedding engagement into screening, prevention, and research, CaRE2-COC builds stronger community-academic partnerships, increases research participation, and advances its mission to reduce cancer burdens in California and Florida.
利益披露 Disclosure
L. Baezconde-Garbanati, None..
P. Holbert, None.