Core C - Education/Outreach

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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.