Identifying methods and criteria for testing

2018-05-17

Well-informed patients provide the most useful preference information. According to an article recently published in Value & Outcomes Spotlight, this raises questions about risk communication, educating patients and psychological variables that affect patients’ preferences. 

Esther W. de Bekker-Grob
Esther W. de Bekker-Grob, PREFER methodology

There is a growing need to evaluate the efficiency of methods for collecting well-informed preferences and to determine why, when and how patient preferences are most useful for different stakeholders, say the authors of Giving patients’ preferences a voice in the medical product lifecycle: why, when and how?

PREFER spent the first year identifying methods to collect patient preferences: Information that can help guide decision-making for the Pharmaceutical Industry, Health Technology Assessment authorities, Reimbursement Agencies and Payers, as well as patients themselves.  

“We have found that stakeholders in PREFER agree that patient preferences can inform benefit-risk decision making for medical products. However, there is a lack of understanding of when and how patient preferences should be included in the medical product life cycle”, says Esther W. de Bekker-Grob, one of the authors.

The authors have led PREFER’s work to identify methods and criteria for testing and to fill existing knowledge gaps by describing why, when and how to include patient preferences in the medical product life cycle. The authors identify a need for further development and evaluation of methods for collecting well-informed patients’ preferences.

So far, the work has included a literature review, interviews and focus groups with patient organisations, physicians, regulators, HTA bodies, industry experts and academics to find out what their concerns, needs, desires and expectations are. PREFER is a public-private partnership with researchers and experts from Industry, HTA and Academia. Right now, the teams involved are working to make results available in publications. 

As this work comes to an end, a new team begin testing the results in a number of clinical case studies, looking specifically at three different patient groups: Rheumatoid Arthritis, Neuromuscular Disorders and Lung Cancer. Stay tuned for more to come!

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By Anna Holm