Aim of project
To understand the impact of geography on service access and outcomes for myeloma patients.
Research has shown that geography has an important impact on health care service access and health outcomes. However, the impact of geography on service access and outcomes for myeloma patients specifically remains unknown.
This research project will increase our understanding of the services myeloma patients and their family members have access to across the UK and how this impacts patient outcomes. The objectives of this research are to:
- Understand what services myeloma patients and their families have access to at the local and regional levels across the UK.
- Understand how local service access impacts myeloma patient outcomes including patient quality of life.
The National Institute for Health and Care Excellence (NICE) has guidelines for myeloma diagnosis and management which provide recommendations on what services should be available to myeloma patients at the local and regional levels. Yet for some patients, the burden of receiving care at different centres can be high due to the need for travel, and potential overnight stays. Additionally, myeloma patients have highlighted to Myeloma UK the value of having access to a haematology (or myeloma specific) clinical nurse specialist. Yet, the availability and accessibility of such services across the United Kingdom remains unknown. As research into geographic inequalities in Myeloma in the UK has received limited attention, it is also not known how service provision impacts patient outcomes.
Who is involved with the project
This project has not yet started. Myeloma UK will put out to tender applications from UK universities to conduct the research.
How this project will help Myeloma patients
The project is not about assigning blame to any trust or individual. Rather, the project will look at where inequality might lie and generate ways in which stakeholders such as Myeloma UK can support patients to have better access services.
Acknowledgements and funding
Takeda UK Ltd. and Sanofi UK have funded the project but have had no editorial control over the content or outputs. Takeda UK Ltd. has also supported the project as an active member of the strategic advisory group.
Myeloma UK will act on the findings generated by this project to enhance patient care in the UK. It will do this by using findings from the study as evidence in policy discussions and briefings to advocate for better and fairer myeloma care and treatment for patients; using findings to inform future support and information events in areas where support may be lower; and generally helping Myeloma UK staff better understand patients and their families so as to provide the most appropriate support.