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Digital Person-Centred Cancer Care

Matt Hall's PhD project


Let's work together to improve the quality-of-life for those with cancer in Wales through digital innovation.

This site is still being created with more content to come, but take a look around and feel free to get in touch if you have any questions!

The background

Cancer diagnosis is a notoriously grievous and brutal experience, and one that's extraordinarily difficult to deal with on a physical, mental, and psychosocial level. Treatment regimens come thick and fast; constant appointments, harsh treatments, side effects, and the complete and abrupt disruption to every aspect of the day-to-day can leave those receiving care feeling powerless. Cancer treatment becomes a painful burden in itself — with a confusing barrage of scans, drugs, and tests frequently leading those with cancer to frustration and overwhelm.

For caregivers, it can be extremely difficult to understand and empathise with the true extent of the situation of those with cancer due to the constant and demanding workload driven by systemic financial and workforce shortages. This can leave those with cancer feeling unsupported and vulnerable — dehumanised by the system, withdrawn from their care, and angry with caregivers.

Improving this difficult situation in Wales requires a complete shift in the way cancer care is delivered: a holistic focus no longer limited to simply trying to extend one's lifespan or achieve maximal cost efficiency. Factors such as emotional support, involvement of family and friends, shared decision-making, self-care, respect for preferences, and continuity of care need to take centre stage in cancer practice. Thankfully, this person-centred model of healthcare has been formally recognised and become part of NHS Wales' new central strategy — codified in recent national policy. However, it's a long and tumultuous road ahead for the service as it endures extreme financial constraints and record-long treatment waiting lists.

The vision

We envision a future cancer care experience rich with technology that's designed by those receiving care, for those receiving care. An interconnected and intelligent system of apps, wearable technology, smart devices, inference, and data will provide an accurate, subjective perspective of each person's life. Caregivers will better understand what it's really like for those undergoing treatment, who will subequently be able to keep care receivers continuously educated on and involved in the decision-making for their treatment. Care receivers will be empowered with the knowledge to decide on their own care plan with the full support and input of family and healthcare professionals, and be empowered with the knowledge and resources to deal with all of the issues associated with treatment promptly.

The project

The aim

Our project is all about finding technology that works to achieve our person-centred vision. Working directly with those receiving care at Velindre Cancer Centre in Cardiff, we will co-design and trial sustainable digital cancer interventions that empower those using them. Due to the participatory nature of the projectm we don't yet know what these interventions will entail, but our team of computer scientists and healthcare professionals are ready to make them succeed.

Of course, creating such interventions is fruitless if there's no commitment from organisations and management. Luckily, NHS Wales is primed and ready to embrace person-centred healthcare with the creation of the Welsh Value in Health Centre, and Velindre Cancer Centre are undertaking a radical redevelopment of their strategy to put 'digital first'. We're confident then that our work will contribute to the future of cancer care in Wales and provide some of the groundwork for NHS Wales' massive, world-leading redevelopment.

The technical details

There is huge potential for digital innovation in patient reported outcome measures (PROMs) to empower those undergoing cancer treatment and facilitate the shift towards person-centred healthcare, with many digital avenues — wearables, IoT, machine learning, natural language processing — currently almost completely unexplored in the PROMs literature. At the same time, we find that existing PROMs instruments have been designed by caregivers, for caregivers with rather minimal input by care receivers. Therefore, we also place a key focus on adopting a participatory design methodology; realigning PROMs to be instruments for empowering care receivers by having them as key stakeholders throughout the design stage.