Survey: patient preferences in Health Technology Assessment (HTA)

Myeloma UK news, Research news // 17th May 2017

A new survey being funded by Myeloma UK and carried out by the National Institute for Health and Care Excellence (NICE) has opened to myeloma patients.

Take part now

Find out more in the survey’s participant information sheet.

The research looks to answer two key questions:

  • What issues are most important to myeloma patients when it comes to their treatment experience and its outcomes?
  • How can we improve the way drug approval bodies take into account patients’ views on the benefits and disadvantages of treatments?

We hope the research project will highlight the importance of patient preference data in assessing new medicines for use on the NHS and help improve how these preferences are taken into account in the decision making process.

What is the survey?

The survey is funded by Myeloma UK and is being carried out by NICE which assesses new treatments and makes recommendations about whether they should be provided by the NHS in England and Wales.

It is part of a research project exploring how we can improve the way patient preferences are included in the Health Technology Assessment (HTA) process. The term ‘patient preferences’ is used to describe the methodology used to capture people’s preferences for hypothetical and real treatment options (e.g., between benefits and risks, between favourable and unfavourable effects, and different options).

You can find out more about how Health Technology Assessment works in our Infosheet. The two year project is being conducted by Dr Luke Cowie, Scientific Advisor in the Science Policy and Research team at NICE: “Patients are the experts here – we want them to tell us what makes treatments beneficial and what the biggest disadvantages of treatment are. We are hoping that as many people as possible will get involved- anyone with myeloma can take part.”

“This survey is an opportunity for myeloma patients to tell us what factors are most important to them when considering treatments and how these factors impact on their lives.”

This survey is an opportunity for myeloma patients to tell us what factors are most important to them when considering treatments and how these factors impact on their lives.

Dr Luke Cowie, Scientific Advisor in the Science Policy and Research team at NICE

Myeloma UK Health Services Research Manager, Dr Jayne Galinsky said, “Myeloma UK is determined that the patient’s voice should be heard by decision makers.

“At the moment, patients and Myeloma UK can comment on evidence submitted to NICE as part of the drug approval process. However, we need to do more to ensure that what is important to patients is an integral part of the evidence itself.  This research aims to improve patient representation in the decision-making process.”

What is involved?

Participants will be asked a number of open ended questions about what is important to them when it comes to myeloma treatments and the type of patient preferences they think should be considered by bodies like NICE when assessing a myeloma treatment for use on the NHS.

Luke continues, “The survey will provide a significant contribution to our assessment of how patient preferences might be better incorporated into decisions about new medicines in the future.”

Who can take part?

Anyone with a diagnosis of myeloma (including smouldering myeloma) is invited to take part. The survey is completely anonymous.

Take part now

Find out more in the survey’s participant information sheet.