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New research supports better integration of patient voice in health technology assessments

Today, 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 project, which was funded by Myeloma UK and conducted by The Science Policy and Research team at NICE, sought to further understand the way quantitative patient preference data can be collected and used in a meaningful way by health authorities when they assess the value of new medicines and treatments. 

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.   This creates the risk of a lack of understanding and proper consideration of the patient voice in the process.

The research report found that there is a clear scope for the better use of quantitative patient preference data in health assessments, and that quantitative patient preference data could help better reflect the experience of the wider patient population. 

 Dr Jayne Galinsky, Myeloma UK and project lead 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.”

The joint project with NICE is a new way of approaching how we work together to make things better for patients and is testament to Myeloma UK’s commitment to partnership working to improve access to treatment for patients.

Dr Jacoline Bouvy, Senior Scientific Adviser, NICE said:

“We found that there clearly is potential to make better use of patient preferences studies in healthcare decision making and guideline development. NICE is keen to support the further development of patient preferences studies through its Scientific Advice service, and now that this project is finalised, the NICE Science Policy and Research programme will continue to engage with patient advocacy groups, academics, and other stakeholders to help progress the use of these studies.”

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. Companies who are interested in performing these studies can get in touch with the NICE Scientific Advice team for more information. 

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Last Updated: 02-Jul-2019