Core C - Education/Outreach

项目摘要 教育/外联核心将与主要利益攸关方接触，以扩大P50的影响和传播 中心活动，并对临床实践产生持续影响。为了实现这些广泛的目标，核心有 三个具体目标。首先，Core将保持与患者群体的接触，并在我们悠久的历史基础上再接再厉 患者的协作和共同创造。我们将建立新的关系，加强现有的伙伴关系 促进患者群体的双向交流。这种参与有助于确保研究和临床护理 对患者确定的优先事项做出反应。与患者社区的接触对于确保 研究成果可以有效地转化为对健康和福祉有意义的改善。 这一目标的交付成果将提供证据基础，为参与的最佳实践/方法提供信息 地理上分散的患者群体。第二，核心将制定简明、循证的指导方针 用于转介提供者将基因检测结果返回给患者。我们将建设基础设施和创造资源 支持临床医生将研究结果返还给研究参与者。我们将借鉴以下原则 神经科学，认知心理学和治疗教育，以确定最佳的视觉呈现 数字遗传概念，促进与遗传受限患者/家庭的有效沟通 识字/算术。由此产生的交付成果将加深临床医生对最佳实践的了解并被接受 报告指南，并将支持提供商使用以个人为中心的沟通做法的信心。 使用‘设计思维’(以用户为中心/以人为中心的设计)为临床医生开发参考材料将 确保资源是可访问的、相关的并对临床医生和患者的需求做出响应。活动将 使发现能够接触到患者/家庭，使个人能够利用遗传信息 改善健康和福祉。最后，核心将策划和共同创建患者材料，并传播到 患者、家属和临床医生通过建立在“设计思维”(以用户为中心的设计)基础上的用户友好的网站。我们 将与患者组织合作，满足患者对可靠、经过管理的信息的渴望。我们会 共同创建解决方案，以满足患者确定的未满足的信息需求，并使用“设计思维”来开发和 推出一个用户友好的网站，用于跨多个在线平台(智能手机、平板电脑)进行电子传播 或计算机)。这一目标的成果将使患者/家庭能够了解不孕不育，被告知 新兴的研究成果，参与研究并找到点对点支持的链接。支持网络的 平台还将作为临床医生(即医生、遗传咨询师)的持久补充资源 在提供不孕不育护理方面。提供者可以将患者引导到网站，以了解导致不孕不育的疾病， 为改善健康和福祉寻找资源和支持。

PROJECT ABSTRACT The Education/Outreach Core will engage with key stakeholders to magnify impact and dissemination of P50 Center activities and exert sustained impact on clinical practice. To achieve these broad goals, the Core has three specific aims. First, the Core will maintain engagement with patient groups and build on our lengthy history of patient collaboration and co-creation. We will build new relationships and strengthen existing partnerships with patient groups to foster bi-directional exchange. Such engagement helps ensure that research and clinical care are responsive to patient-identified priorities. Engagement with patient communities is essential for ensuring that research findings can be effectively translated into meaningful improvement in health and wellbeing. Deliverables from this aim will provide an evidence base informing best practices/approaches for engaging geographically dispersed patient populations. Second, the Core will develop concise, evidence-based guidance for referring providers to return genetic test results to patients. We will build infrastructure and create resources supporting clinicians in returning research findings to research participants. We will draw on principles of neuroscience, cognitive psychology and therapeutic education to identify the optimal visual presentation of numerical genetic concepts to facilitate effective communication with patients/families with limited genetic literacy/numeracy. Resulting deliverables will deepen clinician knowledge of best practices and accepted reporting guidelines and will support provider confidence in using person-centered communication practices. Using ‘design thinking’ (user-centered/human-centered design) to develop reference materials for clinicians will ensure that resources are accessible, relevant and responsive to clinician and patient needs. Activities will enable discoveries to reach patients/families in ways that empower individuals to use genetic information for improved health and wellbeing. Last, the Core will curate and co-create patient materials and disseminate to patients, families and clinicians via a user-friendly website built on ‘design thinking’ (user-centered design). We will collaborate with patient organizations to respond to patients’ desire for reliable, curated information. We will co-create solutions to unmet patient-identified informational needs and use ‘design thinking’ to develop and launch a user-friendly website for electronic dissemination across multiple online platforms (smartphone, tablet or computer). Deliverables from this aim will enable patients/families to learn about infertility, be informed of emerging research findings, participate in research and find links to peer-to-peer support. The web-enabled platform will also serve as an enduring, supplemental resource for clinicians (i.e. physicians, genetic counselors) in providing infertility care. Providers can direct patients to the website to learn about conditions causing infertility, find resources and support for improving health and wellbeing.