Myeloma UK and the National Institute for Health and Care Excellence (NICE) have released a report outlining the findings from a research project which examined how patient preference data could be more formally incorporated in health technology assessments (HTA).

The research showed a clear scope for the better use of quantitative patient preference data in health assessments, as insights from the patient and family member workshop demonstrated how myeloma impacts the lives of patients in different ways and how important it is that these preferences are captured and used.

This will help ensure new treatments reflect the needs and preferences of patients and family members living with myeloma and other conditions.

It also found that quantitative patient preference data could help better reflect the experience of the wider patient population, and that patient preference studies might also provide important insights in conditions where a person’s experience of the condition, and what treatments they might prefer, can differ a lot from person to person.

Currently, patient perspectives are captured without systematic or agreed methodologies, instead they are provided by a small number of patients in narrative form in HTA appraisal meetings. This means that whilst patient input is listened to, the current system does not always capture how treatments are valued by patients, as patient experience can be particularly hard to quantify compared against other evidence such as clinical trial data.

How patients value a treatment is “not always a straightforward choice”, explained Dr Jayne Galinsky, Myeloma UK and project lead.

She went on to say that “It can depend on complex trade-offs based on patients’ personal circumstances and their priorities – a 55 year old and an 80 year might make very different treatment choices, despite both having the same condition.

“Patients need access to the most effective treatments and it is important that decision makers understand the benefits and risks of new treatments from a wider patient perspective.  By making recommendations about the right models for incorporating patient preferences into HTA decision making, this study is the next step to ensuring that patients’ voices are properly heard.”

This study is the first step towards the use of quantitative patient preference data to strengthen the patient voice within health technology assessments.  Recently the NICE Scientific Advice team have piloted providing scientific advice for a patient preferences study.