2023 HSR&D/QUERI National Conference
4080 — Before Introducing a Decision Aid, Give Black Veterans Permission to Participate in Shared Decision-Making
Lead/Presenter: Anna Barker, COIN - Bedford/Boston
All Authors: Barker AM ((Center for Healthcare Organization & Implementation Research, Bedford/Boston)), Wiener RS (CHOIR; Boston University) Herbst, AN (CHOIR) Kaitz, J (CHOIR) Rodriguez, JA (CHOIR; Boston University) Fix, GM (CHOIR; Boston University)
Decision aids increase a patientâ€™s role in shared decision-making (SDM) â€“ the process where patients and clinicians exchange information and deliberate before arriving at a clinical decision together â€“ by providing information about treatment options and equipping patients to communicate their preferences. The utility of decision aids is limited, however, because they do not address the power differential that prevents some patients from participating in conversations and decision-making with clinicians. This power differential is more pronounced among Black Veterans, who are more likely to defer to authority and less likely to have their concerns validated in the clinical encounter. Our co-design team created a Veteran-facing booklet to directly address this power imbalance, empower Black Veterans to participate in SDM, and reduce this disparity. SDM for lung cancer screening (LCS) was used as an example: notably, Black Americans derive the greatest mortality benefit from, but are less likely to participate in, LCS.
We worked with a team of 5 Veterans from diverse racial backgrounds to co-design a 30-page illustrated Veteran-facing booklet. It includes a series of narratives from Veterans who describe the benefit of playing an active role in provider-patient communication; didactic information about SDM and LCS; and self-reflection activities. We sought feedback on the booklet from a separate group of Veteran stakeholders familiar with SDM for LCS (n = 4), then interviewed LCS-eligible Veterans (n = 3) in a small pilot test of the bookletâ€™s acceptability.
By drawing from Veteransâ€™ expertise-by-experience, we created an engaging, culturally sensitive product that reflects the Veteran voice. Veteran stakeholders, for example, felt the personal stories in the booklet resonated with their experiences: â€œThe goal of the booklet is to inform Veterans how to be more proactive in your healthcare. I liked the personal stories â€“ I said, oh yeah, that happened to me.â€ A Veteran in the pilot interviews reacted to a self-reflection activity by saying, â€œ[It] kind of makes me think that thereâ€™s other people out there that do the same thing. It makes me feelâ€¦more confident, the next time Iâ€™ll try not to downplay [my symptoms].â€ Given these initial positive results, we are currently testing the bookletâ€™s effectiveness, as measured by self-efficacy, engagement in care, perceived normative pressure, and intention to participate in both SDM for LCS and the broader clinical conversation, by surveying a random sample of Black Veterans eligible for LCS (n = 100). We are also conducting focus groups (n = 15) to understand the contextual factors influencing the bookletâ€™s impact on Black Veterans. This analysis will be completed in September 2022.
Empowering Black Veterans to participate in clinical conversations is an important first step to ensuring successful SDM. Our co-designed booklet that seeks to influence Veteransâ€™ expectations of their role in the clinical encounter, by normalizing active participation, was well received in early acceptability testing. Survey and focus group results will evaluate its effectiveness among this population.
Veteran-facing materials co-designed by Veterans show promise for creating products that are engaging, culturally sensitive, and influential.