The Myeloma Infoline and Ask The Nurse services are fully staffed and are here to answer your questions and concerns and be a listening ear.

You can also visit our dedicated COVID-19 Information Hub for the latest information.

page

Health Services Research Programme

Our Health Services Research programme aims to better understand the needs and experiences of people affected by myeloma. Our work informs the way myeloma is treated, managed and shape how patient care is designed, delivered, and funded.

What is the Health Services Research Programme?

Health services research considers how various factors impact healthcare delivery. We created the Health Services Research Programme in 2007 to better understand the needs and experiences of myeloma patients and their families.
For many of our health services research projects we collaborate with experts from healthcare and academic organisations. Our Health Services Research Grants fund projects that generate evidence and answer key questions around myeloma care. You can find out more about current grant opportunities here.

Our priority topics for health services research are:

  • Patient preferences and patient experiences
  • Myeloma diagnosis
  • Quality-of-life and wellbeing
  • Organisation and delivery of services and care
  • Information and support needs
  • Regulatory and Health Technology Assessment issues

You can read more about our completed and ongoing health services research projects here.

How does the Health Services Research Programme benefit myeloma patients and their families?

Patients and carers come first in everything we do. Myeloma UK uses the findings from health services research projects as evidence in policy discussions and briefings to advocate for better and fairer myeloma care and treatment for patients. The research also helps Myeloma UK staff better understand patients and their families which enables us to provide the most appropriate support.

Through the information we’ve gathered so far, we’ve helped shape how myeloma patients are treated and managed. You can read more about how our health services research projects have benefitted myeloma patients and their families here.

How can I get involved?

Myeloma patients and carers can learn about taking part in our projects by joining our patient and carer research panel.

Researchers can find information on our funding opportunities here.

Our Health Services Research projects

Active

The myeloma treatment journey: What matters most and how satisfied are patients, carers, clinicians, and healthcare decision makers

Active

Improving the outcome of patients with multiple myeloma through understanding the causes and effects of frailty

Active

Helping patients to be more involved in treatment decisions

Active

Geographical Inequalities in Myeloma

Active

Patient experiences of the myeloma treatment and care pathway: Results from the 2018 National Cancer Patient Experience Survey

Complete

The impact of advanced myeloma on physical and mental health

Complete

Understanding the experiences of patients and caregivers living with myeloma after treatment

Complete

Improving outcomes for patients with AL amyloidosis

Complete

Living with myeloma-related pain

Complete

Developing a myeloma specific quality of life questionnaire (MyPOS)

Complete

Designing new ways of looking after myeloma patients in remission

Complete

Understanding the experiences and perspective of carers of myeloma patients

Complete

Patient experiences of the myeloma treatment and care pathway: Results from the 2014 National Cancer Patient Experience Survey

Complete

Developing clinical guidelines for the diagnosis, management, and support of myeloma patients

Help & Support: Speak to one of our trained and qualifed Myeloma Information Specialists or email us