A roadmap for patient-public involvement and engagement (PPIE): Recounting the untold stories of breast cancer patient experiences
A roadmap for patient-public involvement and engagement (PPIE): Recounting the untold stories of breast cancer patient experiences
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患者与公众参与 (PPIE) 路线图：讲述乳腺癌患者经历中不为人知的故事
DOI：
10.1101/2023.06.19.23291192
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发表时间：
2023
期刊：
影响因子：
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通讯作者：
Cunningham M
中科院分区：
文献类型：
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作者：
Cunningham M
乳腺癌在全世界妇女中仍然是一种普遍疾病。虽然乳腺癌护理标准的显著进步有助于改善患者的生存和生活质量，但乳腺癌的诊断和随后的治疗干预对患者的生活经历有着持久的影响。高质量的医疗保健系统采用以患者为中心的医疗保健方法，患者参与是提供以患者为中心的护理的核心支柱。然而，患者和研究人员之间的脱节可能导致研究缺乏与患者健康需求的现实相关性。在这里，我们报告了一个患者和利益相关者参与研讨会系列，其概念旨在促进乳腺癌患者、乳腺癌研究人员和参与其护理的临床医生之间的对话。我们提出了合作学习的过程和从这个病人参与研讨会系列作为一个社区学术伙伴关系的新兴机会。方法我们报告了一个由三部分组成的讲故事研讨会，研讨会的主题包括提高对乳腺癌诊断后患者生活经验的认识，研究人员开展的乳腺癌研究活动，以及多学科医疗团队在乳腺癌管理中使用讲故事作为工具的方法。我们使用迭代的方法来建立群组信任和关系，叙述发展，并使用多种媒体格式来捕捉患者的故事。这包括使用对象记忆、讲故事提示卡和开放式麦克风音频格式来捕捉患者从诊断到治疗和缓解的故事。结果20名患者分享了他们的故事，并从录音的定性分析中得出了关键主题。对许多人来说，这是她们第一次在家人和朋友之外谈论自己的乳腺癌经历。新出现的主题包括公众对乳腺癌诊断的常见误解，自我宣传在患者治疗决策中的重要性，以及乳腺癌患者复杂的情感历程。以小组为基础的讲故事方法提供了集体授权，可以分享个人经历，并在同伴社区之间建立有意义的联系。虽然乳腺癌的诊断可能从身体、社会、情感和认知的角度来看是压倒性的，但讲故事作为一种患者参与的方法可以建立患者对研究人员的信任，确保他们作为关键利益相关者参与到研究过程中。了解患者对乳腺癌诊断和后续经历的看法可以帮助医疗保健专业人员开发一种共情的方法来共享信息，并使患者参与有关其医疗保健的共同决策。
IntroductionBreast cancer remains a prevalent disease in women worldwide. Though significant advancements in the standard of care for breast cancer have contributed to improved patient survival and quality of life, a breast cancer diagnosis and subsequent treatment interventions have a long-lasting impact on patients’ lived experiences. A high-quality healthcare system uses a patient-centred approach to healthcare, with patient engagement being a central pillar in the delivery of patient-centred care. However, the disconnect between patients and researchers can translate into research lacking real-world relevance to patient health needs. Here, we report a patient and stakeholder engagement workshop series that was conceptualized with the goal of promoting dialogue between patients with breast cancer, breast cancer researchers and the clinician involved in their care. We present the collaborative learning process and emerging opportunities from this patient engagement workshop series as a community-academic partnership.MethodWe report on a three-part storytelling workshop, with the scope of the workshops including topics related to raising awareness of the patient lived experience following a breast cancer diagnosis, breast cancer research activities undertaken by researchers, and the approach used by multidisciplinary healthcare teams in the management of breast cancer using storytelling as a tool. We used an iterative approach to cohort trust and relationship building, narrative development, and the use of multiple media formats to capture patient stories. This included the use of object memories, storytelling prompt cards and open-mic audio format to capture patient stories from diagnosis to treatment, and remission.Results20 patients shared their stories with key themes emerging from the qualitative analysis of audio recordings. For many, this was the first time they had spoken about their breast cancer experience beyond family and friends. Emerging themes included common public misconceptions about a breast cancer diagnosis, the importance of self-advocacy in patient decision making about treatment, and the complex emotional journey experienced by patients diagnosed with breast cancer. The group-based storytelling approach provided collective empowerment to share personal experiences and connect meaningfully across the peer community.ConclusionWhile a breast cancer diagnosis can be overwhelming from a physical, social, emotional and cognitive perspective, storytelling as a patient engagement approach can build patient trust in researchers, ensuring that as key stakeholders they are involved in the process of research. Understanding the patient perspective of a breast cancer diagnosis and subsequent experiences can support healthcare professionals in developing an empathetic approach to sharing information, and involving patients in shared decision making about their healthcare.
基于阶梯网络半监督学习的用户属性预测模型研究
DOI：
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发表时间：
2022
期刊：
影响因子：
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作者：
竹内瑞生;今福太一;阪井優太;後藤正幸
通讯作者：
後藤正幸
通过故事让研究活跃起来：反思研究讲故事作为一种公众参与方法
影响因子：
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作者：
Judith E. Krauss;Suma Mani;Jonas Cromwell;Itzel San Roman Pineda;F. Cleaver
通讯作者：
F. Cleaver
DOI：
10.1111/hex.12841
发表时间：
2019-03
期刊：
Health expectations : an international journal of public participation in health care and health policy
影响因子：
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作者：
Pii KH;Schou LH;Piil K;Jarden M
通讯作者：
Jarden M