Improving the lives of people living with and beyond cancer: Generating the evidence needed to inform policy and practice

Abstract

Improvements in screening, early detection and treatment have led to more people surviving and living longer following cancer diagnosis. There is growing recognition that people living with and beyond cancer may experience symptoms and problems related to the disease and its treatment in the months and years following diagnosis. The impact this can have is variable, but with a growing number of cancer survivors it is important to know who needs support and how this should be delivered in a resource constrained health service. Researchers and policy-makers must find ways to work together to generate and use evidence to improve the quality of survival. We must: (1) Continue to investigate this growing population and recognise the importance of patient reported outcomes and experiences in the design, planning and evaluation of services; (2) Focus on the most pressing research questions to improve the lives of people living with and beyond cancer. Understanding the experiences of people living with and beyond cancer will support future patients to make choices, manage the consequences of cancer and its treatment, identify who needs most support and how this should be delivered; (3) Acknowledge and seek solutions to the challenges of building the evidence and using it to develop, implement and sustain practice innovation. Challenges include identifying most effective ways for researchers to work with stakeholders (policy, practice, public) to maximise the impact of research, establishing mechanisms for effective implementation and sustainability of clinical services, securing large scale research funding and developing next generation of research leaders.