OBJECTIVES:

Regulators and pharmaceutical and medical device manufacturers acknowledge the role patient-preference research can play in patient-focused drug development (PFDD). The growing recognition of the value of equity, diversity, inclusion, and belonging (EDIB) initiatives has challenged stakeholders to identify opportunities to promote diverse healthcare perspectives from underserved populations. Applying EDIB principles to the collection, interpretation, and use of patient preference information (PPI) in PFDD can support more inclusive and equitable health outcomes. We present specific examples of how PPI can advance EDIB in PFDD, as well as challenges.

METHODS:

PPI research systematically presents patient perspectives to regulators and industry to inform PFDD. We identify 3 ways preference research can and is addressing diversity and representation in PFDD to ensure that PPI and PFDD processes and outcomes are inclusive.

RESULTS:

At the study design phase, promote diversity among study teams by including preference researchers, patient scientists, clinical experts, and/or healthcare providers with diverse backgrounds to ensure the study design, execution, and interpretation of preference research considers diverse perspectives and underrepresented stakeholders.

Recruit more inclusive study samples for research studies to ensure that PPI characterizes the perspectives of a diverse group. Include recent empirical studies of preference heterogeneity to highlight insights that may be gained from more diverse samples as well as the challenges in recruiting them. Provide the resources needed to achieve EDIB goals.

Use inclusive language in data collection tools and medical writing to help respondents and decision-makers feel validated and make data more accurate and robust.

CONCLUSIONS:

We identify areas to advance EDIB principles in patient preference study design to ensure PFDD addresses the needs of a more diverse constituency and yields more equitable health outcomes. Researchers are challenged to address EDIB principles, understand barriers to applying EDIB principles, and create solutions for diversifying patient preference research.