We created the Health Services Research Programme to better understand the needs and experiences of myeloma patients, and their families. Through the information we’ve gathered we’ve helped shape how myeloma patients are treated and managed.
Several of the projects and studies have been the result of collaborations with experts or established organisations. Each document is designed to support healthcare professionals in their role caring for myeloma patients.
Our priority topics for HSR are:
- Improving myeloma diagnosis
- Quality-of-life and wellbeing
- Organisation and delivery of services and care
- Information and support needs
- Regulatory and HTA issues
- Piloting methodologies for capturing patient preferences
Myeloma patients can take part in future studies by joining our patient and carer research panel.
NICE Patient Preferences Report
The NICE Patient Preferences Report is an exploratory study to determine how patient preferences data could be used in health technology assessment (HTA).
Our strategy is to make sure that the patient voice is used to inform decision making to benefit patients. This includes decisions around the availability of treatments, so evidence for the value of treatments can be considered in ways which also matter to patients.
From 2016 to 2018, NICE (the National Institute for Health and Care Excellence) and Myeloma UK collaborated on this research to understand more about the way that organisations such as NICE can use insights from patients in their decision making about new medicines. Myeloma UK funded the project and the Science Policy and Research Team at NICE conducted the study, with input from myeloma patients and family members and other stakeholders.