The United Kingdom National Institute for Health and Care Excellence (“NICE”) has awarded a health research grant to fund an exploratory study on whom patient preferences could be captured and included in Health Technology Assessment (“HTA”).

The £120,000 grant was awarded by Myeloma UK, a registered charity since 1997. Myeloma UK is the only organisation in the UK focused on developments of treatments and better quality of life for patients suffering from myeloma. Its intention is to fund a two year methodological study at NICE to research best practices and technologies.

Research of myeloma

The funding provided by Myeloma will support a new type of study at NICE which aims to improve the way patient perspectives are taken into considerations and decisions about the availability of new treatments.

Decisions by HTA bodies such as NICE have a large impact in determining which treatments patients and their clinicians have access to. However, there is no agreement about how best to use patient’s perspectives with other types of evidence calculated in the cost of new treatments.

The study will analyse the best methods in capturing information about patient preferences relating to their condition and treatments. It will be undertaken in consultation with patient groups, experts and other leading HTA bodies across the world.

The conclusions of the study will help improve the influence of patients’ views in decisions on which treatments are available and ultimately improve access to effective myeloma treatments.

Until now there has been very little research into how best to care for myeloma patients, despite such patients often having fewer treatment options and poorer quality of life. Therefore this study will research indications of frailty in myeloma patients. After collecting and analysing patient data, NICE will develop a simple screening test to help assess and monitor patients at risk of frailty.

By evaluating different ways for prevention and treatment of the impact of frailty, the study will help ensure patients who are frail or at risk of becoming frail to have much better outcomes for their disease.