15 ways to listen to the patient voice

Listening to the patient voice and understanding their benefit-risk trade-offs has the potential to improve patients’ healthcare options. Still, patient preference information is under-utilised in decision-making throughout the medical product life cycle. A recent Health Policy publication explores at which industry, health technology assessment (HTA) and regulatory decision points could use patient preference information and become part of the decision making process, allowing patient’s voices to be heard. 

Patient preferences could help industry, HTA and regulatory bodies enable patient-centric decision-making. Stakeholders agree information about the relative desirability or acceptability that treatment alternatives have to patients can be a powerful tool to make decisions on whether to keep developing a medical product, to approve it or not, and whether it should be offered to patients at a lowered cost.

PREFER researchers identified critical decision points in the industry, regulatory and HTA decision-making where patient preference information can support the process. 6 for industry, 3 for regulatory bodies and 6 for HTA. They are outlined in a recent publication.

With support already generated by all these stakeholders, the authors were able to provide an overview of 15 decision-making points that have potential to include patient preference information. We are hoping that this roadmap will help stakeholders in industry, regulatory bodies and HTA successfully implement patients’ preferences into their decision-making processes. And in the end also strengthen patient centric healthcare.

“We do see regulators and HTA having to take more steps to integrate patient preference information into their decision-making processes, compared to industry. Simply because they have to also take into account how much weight should be given to patients’ preferences compared to other required information, such as safety and cost-effectiveness” says Chiara Whichello, one of the authors.

All in all, recommendations are needed to inform decision-makers about how to best capture patient preferences, which methods to use, how to avoid bias, interpret the results and satisfy the specific decision-criteria for each decision-point.

By Anna Holm

Whichello C, Schölin Bywall K, Mauer J, Watt S, et al. An overview of critical decision-points in the medical produc tlifecycle: Where to include patient preference information in the decision-making process?, Health Policy, 30 July 2020 (in press)

Explore PREFER publications (Link removed)





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The Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 115966. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA).