Myeloma UK establishes patient preference research partnership with NICE

A £120,000 grant to explore best practice in capturing information about patient preferences for inclusion in Health Technology Assessment.

Press release // 1st June 2016

Myeloma UK has awarded a health services research grant to The National Institute for Health and Care Excellence (NICE), to fund an exploratory study on how patient preferences could be captured and included in Health Technology Assessment (HTA).

The £120,000 grant will fund a two year methodological study at NICE. It will explore best practice in the use of different methods and technologies for capturing information about patient preferences relating to their condition and the treatments they receive for it. The study will be undertaken in consultation with patient groups, experts and other leading HTA bodies across the world.

The Health Services Research programme at Myeloma UK focuses on obtaining high quality evidence to help improve patient outcomes, wellbeing and quality of life, and looks to shape improvements in the way healthcare is funded and delivered. Following a competitive open grant round, the NICE study was one of two research proposals to be awarded funding.

Myeloma UK Health Services Research Manager Sarah Richard said, “We are pleased to be working in partnership with NICE on this innovative study. Looking at how new methodologies can enhance the role of patient perspectives in the Health Technology Assessment process is an under-researched but critically important area. Health Technology Assessment decisions have a huge impact on patients’ lives, determining to a large extent what treatments patients and their clinicians have access to.”

Health Technology Assessment bodies need robust evidence on the perspectives of patients in the evidence they consider. This research study takes an innovative and forward-looking approach to establish best practice in the field of patient-centred decision-making. It could have a very tangible impact across the healthcare system.

Sarah Richard, Myeloma UK Health Services Research Manager

The research will be led by Prof Sarah Garner, Associate Director of NICE Science Policy and Research Programme.

Prof Garner adds, “All of NICE’s guidance processes include evidence from patients. This usually comes in the form of submissions from support groups and expert testimony. Occasionally NICE receives surveys or qualitative evidence.

“We have always strived to understand what matters most to patients when we are assessing treatments for them. For example preferences for trade-off between potential benefits and side effects, on how treatments are administered and what matters to patients in terms of potential impact on their daily lives.

“We now want to explore whether we can quantitatively capture patients’ preferences so they can be incorporated alongside other data in decision-modelling.”

We are delighted to have won this grant and we look forward to working with Myeloma UK on this exciting project.

Professor Sarah Garner, Associate Director of NICE Science Policy and Research Programme.

Myeloma UK Policy Manager Kate Morgan works with HTA bodies across the UK.

Kate comments, “Patient perspectives are currently captured in adhoc ways without any validated tools or methodology or by expert patients taking part in appraisals. This study is important because it will look to expand current practice, and provide health technology assessment bodies with the patient perspective data they require. The study will define best approaches to capture what matters to patients and what they think about the benefits and risks of treatments.”

NICE is recruiting a Scientific Advisor for this project. You can find more details here.

Notes to Editors:

Myeloma UK

Myeloma UK is the only organisation in the UK dealing exclusively with myeloma, a cancer for which there is no cure, but many very effective treatments. The charity’s broad and innovative range of services cover every aspect of myeloma from providing information and support, to improving standards of treatment and care through research, education, campaigning and raising awareness. Myeloma UK is passionate and dedicated about what it does and is committed to improving patient outcomes. The organisation receives no government funding and relies almost entirely on voluntary donations and fundraising activities.

Myeloma UK Health Services Research programme

Our Health Services Research programme focuses on obtaining high quality evidence to help improve patient outcomes, wellbeing and quality of life. Through the programme we aim to better understand the needs and experiences of people affected by myeloma and help shape improvements in the way in which myeloma treatment, management and care is designed, delivered and funded.

The National Institute for Health and Care Excellence 

The National Institute for Health and Care Excellence (NICE) is the independent body responsible for driving improvement and excellence in the health and social care system. We develop guidance, standards and information on high-quality health and social care. We also advise on ways to promote healthy living and prevent ill health.

Our aim is to help practitioners deliver the best possible care and give people the most effective treatments, which are based on the most up-to-date evidence and provide value for money, in order to reduce inequalities and variation.

Our products and resources are produced for the NHS, local authorities, care providers, charities, and anyone who has a responsibility for commissioning or providing healthcare, public health or social care services.

To find out more about what we do, visit our website: and follow us on Twitter: @NICEComms.