Developing Data Driven PROMs through Agile Participatory Design and Evaluations of Inclusive Digital Interventions to Support Patient Lead Cancer Care

通过敏捷参与式设计和包容性数字干预评估来开发数据驱动的 PROM，以支持患者主导的癌症护理

• 批准号: 2440563
• 金额: --
• 依托单位: Swansea University
• 依托单位国家: 英国
• 项目类别: Studentship
• 财政年份: 2020
• 资助国家: 英国
• 起止时间: 2020 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=studentship-2440563
• 关键词: Developing; Data; Driven; PROMs; through

With the ongoing challenges posed by the Covid-19 pandemic and necessary changes in patient interactions, we have an opportunity to introduce new digital services into patient centred care model, to further deliver a more defined focus on patient reported outcome measures (PROMs). In addition, we recognise that by digitally enabling our patient community, we provide them with the opportunity to contribute to their personal treatment and care pathway. The Key impacts of the research:1) Understand the methods that underpin current, ad-hoc practice in VUNHST and evaluate it as there are already patients and clinicians in working on this in isolated silos. This will include:Examining the patient experience and consultant relationship, identifying communication improvements and how information is shared.Examining how consultant interventions are triggered and acted upon, to support the patient pathway and the PROM.Developing an understanding of the frequent channels of communication between patient and consultant.Consider the impact of patient-controlled information and the 'consent to share' data across clinical boundaries e.g. GPs, local Health Boards, VUNHST.2)Develop a method grounded in participatory design to develop a PROM and deploy it to understand its impact and potential. This will include:Developing a baseline indication of the outcomes or quality of care delivered to VUNHST patients, for an identified cancer site.Providing an evaluation of the pathway and an understanding of variation in the provision of patient services and outcomes.Considering the pathway in the context of Value Based Healthcare. Conducting a series of short agile cycles to understand the impact of introducing digital/mobile channels in the patient pathway.It is critical that we understand, benchmark and report nationally the outcomes of patients that utilise the services within VUNHST. Developing internally defined PROMs models, that support evaluation of the outcome of patient treatments and create opportunities for more patient led monitoring/co-produced care plans, can impact the quality of patient care. Integrating patient data with the National Data Repository (NDR) will enable pathway linkages with the engagement, treatment, and outcomes for patients.Plan of WorkThe PhD will initially focus on the capture of existing practice - we aim to run observational studies and review literature based off that observation to understand the barriers to the process discussed in area 1 of the proposal. This will necessitate early engagement with NHS ethics application process, and this will serve as a document to capture the work that the PhD student does asthey do it.In year two the work will move to a more hands-on approach working in VUNHST to manage the co-creation of a digitised PROMS and its deployment. The student will run the process and reflect on it to create a methodology that can be employed without their oversight.In year three, the method will be tested in a second-round deployment where the student is purely an observer and not a facilitator of the work. This year will also investigate how the work can connect into digital data practices more generally and how the large volumes of data can influence NHS care practice more generally.Year One ActivitiesNHS Ethics application.Observation of PROMS use in an existing digital intervention in the service to understandinfluence of the metric and collect longitudinal data.Literature review driven by 1.Methodology development based on activities 1. and 2.Year Two ActivitiesSpecific digital PROMS creation and deployment.ongoing iterations every 3-4 months.new PROMS creation and data collection.Methodology refinement and hands-off observations.Year Three ActivitiesLong term data connections reflection.Connections into ongoing work with the centre - larger funding using the early work as a pilotPhD Write up phase

面对新型冠状病毒疫情带来的持续挑战，以及病人互动的必要变化，我们有机会将新的数字化服务引入以病人为中心的护理模式，以进一步提供更明确的病人报告结果指标（PROM）。此外，我们认识到，通过数字化使我们的病人社区，我们为他们提供了机会，为他们的个人治疗和护理途径作出贡献。该研究的主要影响：1）了解VUNHST目前的临时实践的基础方法，并对其进行评估，因为已经有患者和临床医生在孤立的孤岛上工作。这将包括：检查患者体验和顾问关系，确定沟通改进和信息共享方式。检查顾问干预措施如何触发和采取行动，以支持患者路径和PROM。了解患者和顾问之间的频繁沟通渠道。考虑患者控制信息和跨临床边界（如全科医生、当地卫生委员会、VUNHST）的“同意共享”数据的影响。2）开发基于参与式设计的方法，以开发PROM并部署它，以了解其影响和潜力。这将包括：针对已确定的癌症部位，为VUNHST患者制定治疗结果或质量的基线指标。提供路径评估，并了解患者服务和治疗结果的变化。在基于价值的医疗保健背景下考虑路径。进行一系列短的敏捷周期，以了解在患者路径中引入数字/移动的渠道的影响。我们必须了解、基准化并在全国范围内报告使用VUNHST服务的患者的结果。开发内部定义的PROM模型，支持对患者治疗结果的评估，并为更多患者主导的监测/共同制定的护理计划创造机会，可能会影响患者护理的质量。将患者数据与国家数据存储库（NDR）整合将使参与，治疗和患者结局的路径联系成为可能。工作计划The PhD最初将专注于捕获现有实践-我们的目标是运行观察性研究并根据该观察结果回顾文献，以了解提案区域1中讨论的过程中的障碍。这将需要与NHS伦理应用程序的早期参与，这将作为一个文件，以捕捉的工作，博士生做，因为他们这样做。在第二年的工作将转移到一个更动手的方法在VUNHST工作，以管理数字化的PROMS及其部署的共同创建。学生将运行该过程并对其进行反思，以创建一种可以在没有他们监督的情况下使用的方法。在第三年，该方法将在第二轮部署中进行测试，学生纯粹是观察者，而不是工作的促进者。今年还将调查如何工作可以连接到数字数据的做法更普遍，以及如何大量的数据可以影响NHS护理实践更普遍。第一年活动NHS伦理应用程序PROMS使用在现有的数字干预服务的观察understandinfluence的度量和收集纵向数据。和2.第二年活动特定的数字PROMS创建和部署。每3-4次持续迭代months.new PROMS创建和数据收集。方法改进和不干涉观察。第三年活动长期数据连接反思。与中心正在进行的工作的连接-使用早期工作作为试点获得更大的资金博士论文撰写阶段