Core C - Education/Outreach

项目摘要 教育/外联核心将与主要利益攸关方合作，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 三个具体目标。首先，核心将保持与患者团体的接触，并建立在我们悠久的历史基础上 病人的合作和共同创造。我们将建立新的关系，加强现有的伙伴关系， 病人团体，以促进双向交流。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作出反应。与患者社区的接触对于确保 研究结果可以有效地转化为健康和福祉的有意义的改善。 这一目标的成果将提供一个证据基础，为参与的最佳做法/方法提供信息。 地理上分散的患者群体。第二，核心将制定简明的、基于证据的指导 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， 支持临床医生将研究结果返回给研究参与者。我们将遵循以下原则： 神经科学，认知心理学和治疗教育，以确定最佳的视觉呈现， 数字遗传学概念，以促进与遗传受限患者/家庭的有效沟通 识字/算术。由此产生的可交付成果将加深临床医生对最佳实践的了解， 报告指南，并将支持供应商使用以人为本的沟通实践的信心。 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，并响应临床医生和患者的需求。活动将 使发现能够以授权个人使用遗传信息的方式到达患者/家庭， 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 通过一个基于“设计思维”（以用户为中心的设计）的用户友好网站，为患者、家庭和临床医生提供信息。我们 将与患者组织合作，以满足患者对可靠、精心策划的信息的需求。我们将 共同创造解决方案，以满足患者确定的信息需求，并使用“设计思维”来开发和 推出一个方便用户的网站，以便在多个在线平台（智能手机、平板电脑）上进行电子传播 或计算机）。这一目标的实现将使患者/家庭能够了解不孕症， 新的研究成果，参与研究，并找到链接到同行支持。支持上网的 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 提供不孕症护理。提供者可以指导患者访问该网站，了解导致不孕的情况， 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.