Designing a Decision Aid and Referral Tool for Veterans to Improve Equity in Lung Cancer Screening

Rationale: Lung cancer screening (LCS) uptake in the United States remains low with substantial economic and racial disparities in LCS rates, even among centralized LCS programs like that within the Durham Veterans Affairs Health Care System (DVAHCS). We sought to co-develop and refine an electronic patient decision aid (PDA) with direct input from a diverse group of Veterans and providers with the goals of enhancing shared decision-making, streamlining the LCS referral process and increasing equity in LCS uptake. Methods: An initial prototype of a web-based, interactive PDA was developed by the research team using United States Preventative Services Task Force LCS guidelines, the International Patient Decision Aid Standards criteria, and equity frameworks. A Design Team consisting of LCS staff and screening-eligible Veterans from racially and ethnically minoritized groups and/or rural areas were recruited to participate in a full-day workshop conducted by a facilitator trained in human-centered design (HCD) along with study team members with expertise in qualitative research and LCS. Activities and exercises from the Field Guide to HCD were employed to co-design and iteratively refine the electronic PDA prototype. Demographic and post-workshop satisfaction surveys were completed by participants. A qualitative thematic analysis of workshop notes and observations was performed using an a priori coding schema. Results: Ten Veteran patients and 5 LCS staff participated in the workshop. Among patient participants, 70% self-identified as African American, 90% had mental health or substance use disorders, and 40% lived in a rural area. We identified 5 key design principles from the workshop (Table 1). These addressed technology limitations and barriers, human connections, emotional and mental health needs, content personalization and patient-centric language and images. These principles guided subsequent modifications that resulted in a final PDA and informed implementation strategies for the tool. At the end of the workshop, all participants agreed or strongly agreed that the group was able to work together to solve problems and 80% of participants agreed or strongly agreed that a tool to improve the process for referring Veterans to LCS was successfully developed. Conclusions: HCD was effective in co-developing and refining a PDA with direct input from underrepresented and high-risk Veterans disproportionately affected by lung cancer. We identified several design principles important for an equity-focused, patient-facing decision-making tool. Future research will pilot our PDA at the DVAHCS to assess implementation and effectiveness outcomes.

Duke Scholars

Author Christopher Ethan Cox Medicine, Pulmonary, Allergy, and Critical Care Medicine

Author Leah L Zullig Population Health Sciences