Patient experience and outcomes

What do we know about a patient’s cancer experience in the UK?

With an increasing number of people living with cancer moving through the healthcare system, it is crucial to understand their experiences. By understanding cancer experience and outcomes we can develop solutions to support individual need and to ultimately understand what will enable people living with cancer to take back control.

What is patient experience and outcomes?

Patient experience and outcomes are a way to understand the quality of care a person has received. This can be through looking at Patient Reported Outcomes such as the Cancer Patient Experience Survey, or through understanding specific points in the cancer journey. For example, when patients transition from treatment to recovery from their cancer. 

Patient experience looks at the individual experience of the care and treatment a person has received since diagnosis. This could be good things such as having clear information on treatment or feeling involved in decisions. It could also be more negative experiences such as feeling unable to navigate the health system.

Patient outcomes look at how the treatment and care has impacted the overall success of the care and treatment that individual has received. These can be either short term such as being able to return to work after treatment or longer term outcomes including quality of life and managing consequences of treatment.

How does understanding patient experience and outcomes help us to understand the changing story of cancer?

By seeking to measure patient experience and outcomes it goes beyond just looking at clinical effectiveness of care and tells us, for example, whether patients were treated with dignity and respect, given good information, involved in decisions, and their views and preferences listened to and taken into account.

There are an increasing number of people living with cancer moving through the health system so it has become more crucial than ever to understand their experiences and outcomes. It is also important to understand the longer term outcomes as more people are living with and beyond cancer. 

Why is Macmillan investing in this work?

Macmillan’s ambition is to try to improve the lives of  everyone affected by cancer. A big part of improving the overall outcomes and experiences of people living with cancer is to try and understand their needs and how these affect their outcomes. This enables us to design and test services and interventions to best meet and address these needs to improve overall outcomes and experiences.

Macmillan is the leading expert in this field and has supported a number of initiatives to improve knowledge and understanding of patients’ outcomes and experiences. This has ranged from supporting the roll-out of the Cancer Patient Experience Survey across the UK. This enables us to benchmark the overall experience of cancer patients, understand the social care need of people living with cancer and learn how patients experience transitions in their care. Our research in this area is rich and we continue to discover more about the experiences of the 2.5 million people living with cancer in the UK today.

How do we use evidence about patient experience and outcomes?

We directly feed evidence on experiences and outcomes directly into our service offer and influencing work, to ensure that we and the health system are constantly adapting to the changing needs and priorities of the cancer population.

This includes:

Why is this important for people affected by cancer?

Seeking to capture and understand patient experiences and outcomes enables us to improve and tailor our service offer. Negative experiences and outcomes have a huge impact on both people with, and affected by, cancer. In understanding the needs of people affected by cancer, we are able to improve our services and the wider health system to ensure that both people with, and affected by, cancer feel supported throughout their journey.

For example, Macmillan recently conducted research into the social care needs of people living with cancer, which found that social care needs of people with cancer were far more widespread than previously thought. This understanding has been used to help improve and better integrate the planning and provision of care and support for people living with cancer.

What’s new in patient experience and outcomes?

Recently funded and commissioned research by Macmillan into outcomes and experience include:

  • Advance Care Planning

Macmillan has recently commissioned exploring how people living with cancer and the people surrounding them experience end of life communications and decision-making. In particular, we are hoping to increase our understanding around how people living with cancer like to make end of like decisions and when they want to make them in the context of Advance Care Planning. This research will seek to capture the experiences people living with cancer.

  • Cancer Patient Experience Survey (CPES)

Macmillan has ensured that by the end of 2016, patient experience will be measured and monitored across the whole of the UK to drive improvement and service development. We have worked with the Department of Health then NHS England since 2010 to support the development of the CPES in England. We subsequently established national partnerships to co-fund CPES roll-out across the other three nations in the UK.