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

随着新冠肺炎疫情带来的持续挑战和患者互动的必要变化，我们有机会将新的数字服务引入以患者为中心的护理模式，以进一步提供更明确的重点，专注于患者报告结果衡量(PROMS)。此外，我们认识到，通过使我们的患者社区数字化，我们为他们提供了为他们的个人治疗和护理途径做出贡献的机会。这项研究的主要影响：1)了解支撑VUNHST当前特别实践的方法，并对其进行评估，因为已经有患者和临床医生在孤立的竖井中从事这项工作。这将包括：检查患者体验和顾问关系，确定沟通改进和如何共享信息。检查如何触发和操作顾问干预，以支持患者路径和PROM。了解患者和咨询之间频繁的沟通渠道。考虑患者控制的信息和跨临床边界(如全科医生、当地卫生委员会、VUNHST2)共享数据的同意的影响。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：为已确定的癌症部位制定向VUNHST患者提供的结果或护理质量的基线指示；提供对路径的评估以及对患者服务和结果提供的变化的了解。在基于价值的医疗保健的背景下考虑路径。进行一系列短期的敏捷循环，以了解在患者路径中引入数字/移动通道的影响。我们了解、基准和报告在VUNHST内使用服务的患者的结果是至关重要的。开发内部定义的PROMS模型，支持对患者治疗结果的评估，并为更多由患者主导的监测/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)集成将使路径与患者的参与、治疗和结果建立联系。工作计划博士最初将专注于捕获现有实践-我们的目标是在该观察的基础上运行观察性研究并审查文献，以了解提案区域1中讨论的过程的障碍。这将需要及早参与NHS伦理申请过程，这将作为一份文件，记录博士生在他们这样做的过程中所做的工作。在第二年，这项工作将转移到在VUNHST工作的更实际的方法，以管理共同创建的数字化PROMS及其部署。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。今年还将调查这项工作如何更广泛地与数字数据实践相联系，以及大量数据如何能够更广泛地影响NHS的护理实践。一项活动NHS伦理应用。观察PROM在服务中现有的数字干预中使用，以了解指标的影响并收集纵向数据。文献综述1.基于活动的方法开发1.和2.两年活动特定的数字PROM的创建和部署。每3-4个月进行一次迭代。新的PROM的创建和数据收集。方法的改进和不干预的观察。Year三项活动长期数据连接连接到持续工作中中心-使用早期工作作为试点的较大资金博士撰写阶段

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