Xploro: using gamification to amplify the child patient’s voice and monitor symptoms during times of crisis

** 新型冠状病毒肺炎（COVID-19，即2019冠状病毒病）导致需求增加：** 患有慢性病的儿童（英国约180万）在当前的危机中处于特别困难的时期，他们对感染的恐惧加剧，很少或根本没有与支持人员接触，住院期间对访客的限制以及更难获得医疗服务。对于那些免疫功能低下的人（例如，癌症患者的情况尤其困难。随着自我隔离的需要和NHS被推到了临界点，开发机制来加强在家儿童的远程患者报告并尽量减少面对面的互动至关重要。在这些危机时刻捕捉儿童患者的声音至关重要。来自多项儿科癌症研究的证据表明，与儿童的自我报告相比，临床医生和护理人员低估了症状的数量和严重程度。“如果孩子的声音被忽视，他们所接受的治疗的真正影响就不能完全准确地知道。风险在于，治疗决定将基于善意但不完整的信息做出，我们将无法了解我们为类似诊断的儿童提供的治疗的全部影响。我们需要一种简化的、吸引人的方式来系统地收集儿童的相关主观症状和治疗毒性报告，这样患病儿童的声音就不会被忽视或遗忘。- 我们还需要这种收集基本数据的方式，使患病儿童能够始终获得这些数据，而不受大流行病的限制。“_ Pam Hinds，儿童国家临床中心护理部执行主任。通过开发创新的附加功能，方便捕捉患者反馈，公司Pop（一家总部位于曼彻斯特的中小型企业）将定制他们的Xploro应用程序（旨在为残疾患者提供信息），以应对新冠肺炎疫情带来的新挑战。** ** 使英国的医疗保健服务在面临类似中断时更具弹性。对患者（更多参与，更好的结果），他们的家人/监护人（更少的医院访问，更快乐的孩子）和临床医生（节省时间，提高对治疗效果的理解）的好处。这里的其他信息-我们将扩展原始项目的工作，为临床医生提供安全的数据传输，以使用快速医疗互操作性资源（FHIR）标准同步Xploro PROM响应与电子病历（EPR）。这将进一步提高现有系统的弹性、安全性和易用性，为临床医生提供更好的体验，并消除现有手动数据传输所带来的成本和可能的错误。为了实现这一目标，我们将使用Extension for Impact资金：* 建立一个安全和受保护的方式来存储PROM响应EPR，使用FHIR* 展示了与市场领先的Epic和Cerner系统的概念验证集成（合计占所有EPR系统的50%以上的市场份额）* 改进Xploro中PROM数据的报告 * 完成所有NHS数据安全和监管文书工作，使Xploro能够在系统层面进行集成，并允许处理和存储患者数据 * Xploro应用程序的全面渗透测试以及与第三方系统的所有集成点

**Increased need due to Covid-19:**Children with chronic diseases (~1.8m in UK) are having a particularly difficult time during the current crisis, with heightened fears of infection, little or no contact with support workers, restrictions on visitors whilst in hospital and harder to access healthcare services. For those that are immuno-compromised (eg. cancer patients) the situation is especially difficult. With the need for self-isolation and an NHS pushed to breaking point, it is vitally important that mechanisms are developed to enhance remote patient reporting for children at home and minimise face-to-face interactions.Capturing the child patient's voice at these times of crisis is crucial. Evidence from multiple pediatric cancer studies has demonstrated that clinicians and caregivers underreport the number and severity of symptoms compared with self-reports from children._"If the child's voice is overlooked, the true impact of the therapies they are receiving cannot be fully and accurately known. The risk is that therapy decisions will be made, based on well-meaning but incomplete information, and that we will not learn the full impact of the treatments we are delivering to similarly diagnosed children. We need a streamlined, appealing way to collect the relevant subjective symptom and treatment toxicity reports from children in a systematic manner such that the ill child's voice will not be overlooked or forgotten._ _We also need this way of collecting such essential data to be consistently available to the ill child, unaffected by the constraints of the pandemic."_ Pam Hinds, Executive Director of Nursing, Children's National Clinical Center.Through the development of innovative additional functionalities that facilitate the capturing of patient feedback, Corporation Pop (a Manchester-based SME) will tailor their Xploro App (designed to empower young-patients with information) to the new challenges that the Covid-19 epidemic is presenting.**IMPACTS**Make UK healthcare delivery more resilient when faced with similar disruptions. Benefits for patients (more engaged, better outcomes), their families/guardians (fewer hospital visits, happier children), and clinicians (time saving, improved understanding of therapeutic impact).--- ADDITIONAL INFORMATION HERE ---We will extend the work from the original project to provide secure data transfer for clinicians to sync Xploro PROMs responses with the electronic patient record (EPR), using the Fast Healthcare Interoperability Resources (FHIR) standard. This will further improve the resilience, security and ease-of-use of the existing system, giving a better experience for clinicians and eliminating the cost and possible errors that come from existing manual transfer of data.To achieve this we will use the Extension for Impact funding to:* build a secure and protected way to store PROMs responses against EPR, using FHIR* show a proof-of-concept integration with the market-leading Epic and Cerner systems (together account for >50% market share of all EPR systems)* improve reporting of PROMs data within Xploro* complete all NHS data security and regulatory paperwork to give Xploro the ability to integrate at the systems level and to allow processing and storage of patient data* full penetration test for the Xploro app and all points of integration with 3rd party systems