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Patient-centred research is crucial to value-based improvements in healthcare

CReSt theme 5 lead Professor Simon Noble explains why palliative and supportive oncology research is an integral part of understanding the benefits and burdens of treatments across cancer types, and essential to bringing the patient’s perspective to the delivery of better cancer care across Wales and internationally.

Supportive and palliative oncology focuses on supporting the person with cancer to manage the many impacts of their illness and treatment. Whilst oncologists plan treatment around the tumour itself, supportive and palliative oncology looks at the impact of the disease and treatment on the person’s body, their symptoms and the quality of everyday life.  This research provides crucial evidence for the holistic cancer care that helps patients to make informed decisions throughout their cancer journey.

Understanding the nature of choices around treatment for patients is extremely important, especially if those people are at risk of poorer outcomes. We want to know about the individual’s journey, and whether the balance is right for the person in terms of the burdens vs the benefits of certain treatment pathways.

There are several examples of how we are seeking to do this in Wales. Researchers at the Marie Curie Research Centre (MCRC) at Cardiff University are working to better understand how prepared and supported people diagnosed with cancer are for making often very complex decisions about their treatment and how as healthcare professionals we can empower the person – and those close to them – in that decision-making process. Improving that understanding and preparedness will make for a more informed and equal conversation between oncologists and their patients – resulting in truly co-produced treatment plans. 

Professor Simon Noble is also leading a very large Europe-wide study called the Serenity Study – funded by the European Union Horizon Grants Programme, which seeks to understand patient and family perspectives on the advantages and burdens of treatments for cancer associated clots. This again will put the person and those close to them at the heart of decision making, and create an international template for supporting those individuals to make informed decisions that are personalised to their own experiences and the context of their cancer illness.

Another area of research is to better understand what outcomes are most important to the person with cancer when measuring the success of interventions such as chemotherapy or radiotherapy, or indeed palliative care interventions right through to supporting those close to the person following bereavement. Again, researchers at Cardiff University and MCRC have been active in working with those affected to produce sets of outcomes to be used in research which best reflect those principles – these ‘outcome sets’ have been developed in the areas of brain tumour treatments, cancer-related bowel obstruction, palliative care interventions and in bereavement care.

A further area of exploration is to how to better use information that we routinely collect as part of care to understand how a person is interacting with the systems of care surrounding them and whether they are receiving the right care at the right time. There is still a lot to learn about how we might link routine information together to create a comprehensive map of how care networks and treatments impact on personal experiences. Better understanding the questions to ask, and engaging patients and the public in this process, will create opportunities to refine care and ensure that the right support clusters around a person’s individual needs. Supportive and palliative care researchers in Wales are currently looking at these issues in those with incurable illness and approaching the last year of life, and also looking at safety data and how that can be used intelligently and quickly to drive improvements to care. 

This has major implications for the person in terms of how they’re able to live their life, but also for the NHS from a value-based healthcare point of view. Value is not about the cost, it’s about the ability to make sure that the patient is receiving the most effective and efficient treatment. 

As well as developing and conducting our own research, we also work closely with other researchers across the UK to ensure that patients in Wales have access to important palliative and supportive clinical trials lead by other research groups. One such example is the CHELsea II trial, which explores the role of clinically-assisted artificial hydration at the end of life. Several palliative care groups across Wales are recruiting to this important study. 

Our ambition is to maximise what CReSt can achieve by linking our work in supportive and palliative care with that of researchers across a range of different cancers. We are constantly working to utilise our skillsets in a way that is transferable into the other themes within CReSt. If patient perspective is not at the centre, then we will miss the core of what value-based healthcare is all about.