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

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 Work
The 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 as
they 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 Activities
NHS Ethics application.
Observation of PROMS use in an existing digital intervention in the service to understand
influence of the metric and collect longitudinal data.
Literature review driven by 1.
Methodology development based on activities 1. and 2.
Year Two Activities
Specific 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 Activities
Long term data connections reflection.
Connections into ongoing work with the centre - larger funding using the early work as a pilot
PhD Write up phase

The Centre will nurture 55 new PhD researchers who will be highly sought after in technology companies and application sectors where data and intelligence based systems are being developed and deployed. We expect that our graduates will be nationally in demand for two reasons: firstly, their training occurs in a vibrant and unique environment exposing them to challenging domains and contexts (that provide stretch, ambition and adventure to their projects and capabilities); and, secondly, because of the particular emphasis the Centre will put on people-first approaches. As one of the Google AI leads, Fei-Fei Li, recently put it, "We also want to make technology that makes humans' lives better, our world safer, our lives more productive and better. All this requires a layer of human-level communication and collaboration" [1]. We also expect substantial and attractive opportunities for the CDT's graduates to establish their careers in the Internet Coast region (Swansea Bay City Deal) and Wales. This demand will dovetail well with the lifetime of the Centre and provide momentum for its continuation after the initial EPSRC investment.

With the skills being honed in the Centre, the UK will gain a important competitive advantage which will be a strong talent based-pull, drawing in industrial investment to the UK as the recognition of and demand for human-centred interactions and collaborations with data and intelligence multiplies. Further, those graduates who wish to develop their careers in the academy will be a distinct and needed complement to the likely increased UK community of researchers in AI and big data, bringing both an ability to lead insights and innovation in core computer science (e.g., in HCI or formal methods) allied to talents to shape and challenge their research agenda through a lens that is human-centred and that involves cross-disciplinarity and co-creation.

The PhD training will be the responsibility of a team which includes research leaders in the application of big data and AI in important UK growth sectors - from health and well being to smart manufacturing - that will help the nation achieve a positive and productive economy. Our graduates will tackle impactful challenges during their training and be ready to contribute to nationally important areas from the moment they begin the next steps of their careers. Impact will be further embedded in the training programme with cohorts involved in projects that directly involve communities and stakeholders within our rich innovation ecology in Swansea and the Bay region who will co-create research and participate in deployments, trials and evaluations.

The Centre will also impact by providing evidence of and methods for integrating human-centred approaches within areas of computational science and engineering that have yet to fully exploit their value: for example, while process modelling and verification might seem much removed from the human interface, we will adapt and apply methods from human-computer interaction, one of our Centre's strengths, to develop research questions, prototyping apparatus and evaluations for such specialisms. These valuable new methodologies, embodied in our graduates, will impact on the processes adopted by a wide range of organisations we engage with and who our graduates join.

Finally, as our work is fully focused on putting the human first in big data and intelligent systems contexts, we expect to make a positive contribution to society's understandings of and involvement with these keystone technologies. We hope to reassure, encourage and empower our fellow citizens, and those globally, that in a world of "smart" technology, the most important ingredient is the human experience in all its smartness, glory, despair, joy and even mundanity.

[1] https://www.technologyreview.com/s/609060/put-humans-at-the-center-of-ai/