“You Are the Key”: A co-design project to reduce disparities in Black veterans’ communication with healthcare providers

Abstract

Interventions are needed to overcome a key barrier to patient-provider communication, namely that patients hesitate to participate in clinical conversations because they believe their expected role is to be passive. This expectation is reinforced for veterans, who replicate their experience of military hierarchy in the patient-provider relationship. Black veterans, moreover, encounter structural racism that compounds this power imbalance. This paper describes a co-designed intervention to empower Black veterans to talk with providers, using shared decision-making (SDM) for lung cancer screening (LCS) as an exemplar. We worked with a diverse group of 5 veterans to develop materials that normalize participating in clinical conversations. We then interviewed 10 Black veterans selected from a national sample to assess the booklet’s impact and contextual factors. The co-design team produced a 30-page booklet that includes veteran narratives describing positive clinical interactions, as well as didactic information about SDM and LCS. We identified four themes related to Black veteran participants’ healthcare experience: (1) they want truthful and complete information exchange with providers they know; (2) they often feel their concerns are disregarded; (3) poor communication worsens medical treatment; and (4) they are confused and angry about treatment in clinical encounters that they feel are racist. The booklet was described as interesting and informative. The veteran narratives in the booklet particularly resonated with readers. Assessment of the booklet’s overall impact on planned engagement with providers varied. Co-designed materials that normalize participation in clinical encounters can play a role in reducing disparities in patient-provider communication. Experience Framework This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens.

Keywords

• patient-centered care
• patient engagement
• health disparities
• equity
• communication
• co-design