Pursuing Testimonial Justice: Language Access through Patient-centered Outcomes Research with Spanish Speakers
Glenn A. Martínez, Rachel Showstack, Dalia Magaña, Parizad Dejbord-Sawan, Karol Hardin
Abstract
Abstract Patient-Centered Outcomes Research (PCOR), rooted in the more established tradition of Community-Based Participatory Research (Deeb-Sossa 2019), seeks to empower patients in determining the most appropriate healthcare options by including and amplifying their voices in every aspect of the research process. In this article, we report on the outcomes of a four-year PCOR engagement effort in the US Midwest that aimed to include and amplify patient voices in language in healthcare policy. Our findings revealed feelings of patient disempowerment, discomfort with the social distance created by remote interpreting, and a mismatch of knowledge and expectations among interlocutors in medical interactions. Our discussions also underscored women’s work in addressing healthcare issues within the family and their resilience in describing systemic inequities in health communication. We argue that participation in PCOR empowers patients through the enactment of testimonial justice. We conclude by discussing implications and recommendations for language researchers who are interested in working toward social justice in language in healthcare policy in USA and building a multi-stakeholder platform for PCOR.