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

点击翻译按钮获取中文摘要

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