Demand for Precision Medicine: A Discrete-Choice Experiment and External Validation Study
A limited evidence base and lack of clear clinical guidelines challenge healthcare systems’ adoption of precision medicine. The effect of these conditions on demand is not understood.
This research estimated the public’s preferences and demand for precision medicine outcomes.
A discrete-choice experiment survey was conducted with an online sample of the US public who had recent healthcare experience. Statistical analysis was undertaken using an error components mixed logit model. The responsiveness of demand in the context of a changing evidence base was estimated through the price elasticity of demand. External validation was examined using real-world demand for the 21-gene recurrence score assay for breast cancer.
In total, 1124 (of 1849) individuals completed the web-based survey. The most important outcomes were survival gains with statistical uncertainty, cost of testing, and medical expert agreement on changing care based on test results. The value ($US, year 2017 values) for a test where most (vs. few) experts agreed to changing treatment based on test results was $US1100 (95% confidence interval [CI] 916–1286). Respondents were willing to pay $US265 (95% CI 46–486) for a test that could result in greater certainty around life-expectancy gains. The predicted demand of the assay was 9% in 2005 and 66% in 2014, compared with real-world uptake of 7% and 71% (root-mean-square prediction error 0.11). Demand was sensitive to price (1% increase in price resulted in > 1% change in demand) when first introduced and insensitive to price (1% increase in price resulted in < 0.1% change in demand) as the evidence base became established.
Evidence of external validity was found. Demand was weak and responsive to price in the near term because of uncertainty and an immature evidence base. Clear communication of precision medicine outcomes and uncertainty is crucial in allowing healthcare to align with individual preferences.
The authors thank Dr. Jagori Saha for assistance in conducting the discrete-choice experiment.
All authors participated in the concept and design of the study, data acquisition and interpretation, and contributed to drafting, revising, and final approval of the manuscript. Regier and Carlson conducted the analysis and take responsibility for the integrity of the data and data analysis.
Compliance with Ethical Standards
This work was supported by the National Institutes of Health (NIH) Common Fund project 1U01AG047109. The funding agreement ensures the independence of the authors in all aspects of study design and data interpretation and in writing and publishing the article.
Conflict of interest
Dr. Regier has received travel support from Illumina to attend conferences in Boston, USA, and Barcelona, Spain. Dr. Veenstra has provided paid consultancy to Roche Sequencing Systems. Drs. Carlson and Basu have no conflicts of interest that are directly relevant to the content of this article.
The University of Washington Institutional Review Board granted research ethics to conduct this project.
Informed consent was obtained from all individual participants included in the study.
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