Research and Technology

02.07.19

Myeloma UK report supports better integration of patient voice

Myeloma UK and the National Institute for Health and Care Excellence (NICE) have released a report supporting better integration of patient preference data in health technology assessments (HTAs).

The report was the culmination of a research project funded by Myeloma UK and conducted by the Science Policy and Research team at NICE.

It sought to further understand the way quantitative patient preference data could be collected and used in a meaningful way by health authorities when assessing the value of new medicines and technologies.

Currently there is no systematic or agreed methodology for capturing patient perspectives, instead being provided by a small number of patients in narrative form in HTA appraisal meetings.

This means that while input is listened to, it does not always accurately capture how treatments are valued by patients as their experiences can be hard to quality against other evidence, such as clinical trial data. This risks creating a lack of understanding and proper consideration of the patient voice in the process.

In their research, Myeloma UK and NICE found there is clear scope for the better use of quantitative patient preference data in health assessments and that it could better reflect the experience of the wider patient population.

READ THE FULL REPORT HERE

Project lead Dr Jayne Galinsky, from Myeloma UK, said: “How patients value a treatment is not always a straightforward choice.

“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.”

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