Aim of project
The aim of this project was to understand more about the way patient preference data can be collected and used in decisions about new medicines and treatments.
The patient viewpoint is important for health technology assessment because patients can best represent the experience of living with myeloma. From 2016 to 2018 NICE (the National Institute for Health and Care Excellence) and Myeloma UK collaborated on a piece of research to understand more about the way that organisations such as NICE can use insights from patients in their decision making about new medicines.
This study examining the ways that patient preference data could be used in decisions about new medicines had three stages:
- The first stage was to look at the literature and current research activity relating to patient preferences.
- A survey was completed by 97 myeloma patients and focus groups were held with patients and family members to understand more about what aspects of patient experience should be considered by researchers and by NICE.
- A workshop was then held with researchers, health care professionals, policy makers, and other charities to discuss findings of the study.
A type of study called a ‘discrete choice experiment’ was found to be a promising method for measuring patient preferences. This research suggests that discrete choice experiments could be very helpful to NICE in some situations. Examples include when several, but very different treatment options for the same condition exist, such as a choice between taking a drug or an operation, or a choice between taking a pill daily versus receiving an injection monthly. This project also suggested that there is a clear scope for better use of quantitative patient preference studies.
Who was involved with the project
The principal investigators, Sarah Garner, Rosie Lovett and Jacoline Bouvy from the Science Policy and Research team at NICE conducted the study, with input from myeloma patients and family members and other stakeholders.
How this project will help Myeloma patients
This project demonstrated clearly how myeloma impacts the lives of patients and how important it is that these preferences are captured and used to ensure that new treatments reflect the needs and preferences of patients and family members living with myeloma and other conditions.
Acknowledgements and funding
Myeloma UK funded the project. Myeloma UK acknowledge the input of all the researchers who have worked on this study: Eric Low, Sarah Garner, Sarah Richards, Luke Cowie, Jayne Galinsky, Rosie Lovett, and Jacoline Bouvy. We also thank the patients who guided and supported the study and those who took part in workshops across the UK.
You can read the full report here.