PATIENT PREFERENCES FOR GENOMICS-BASED INDIVIDUALIZED HEALTHCARE: DEVELOPMENT OF A DISCRETE CHOICE EXPERIMENT INSTRUMENT ON PRECISION MEDICINE

Purpose: The Expected Value of Individualized Care (EVIC) framework provides an approach for evaluating the expected value of precision medicine (PM), which will be driven in large part by test uptake and diffusion.  We designed a discrete choice experiment (DCE) instrument to identify and quantify patient preferences for PM testing. 

Method: We conducted patient focus groups (n=14) and interviews (N=6) to inform the development of a set of attributes on PM and refined them through multiple iterations of cognitive interviews (N=11). Attributes and associated levels were selected based on the following principles: 1) patient feedback, 2) relevance to the real-world patient PM decision-making context, 3) patient comprehension, and 4) linkage to EVIC framework.  

Result: Patients expressed a variety of attitudes about the key factors they consider important regarding PM choices.  The most common themes were the ability to select the appropriate treatment, benefit to family members, quality of life after testing, incidental findings, and physician recommendations.  The final DCE instrument attributes included: type of genetic test (i.e. screening test vs. treatment selection test vs. screening + treatment selection test), probability that [the patient has] the medical marker, medical expert agreement on medical care change, change is quality of life, change in duration of life, test accuracy, and cost to [patient] of genetic testing. Essential to the EVIC framework, uncertainty was included within the levels for the duration of life attribute.

Conclusion: The attributes relevant to patient decision making in PM are complex.  Creating a discrete choice experiment instrument within the context of the EVIC framework will facilitate a clearer understanding of uncertainties surrounding PM uptake and diffusion based on key test attributes.