Fostering inclusive language for genitourinary cancer research: A multi-stakeholder co-creation effort.

869 Background: Thoughtful patient inclusion, involving people of all literacy levels and experiences, is essential in cancer research and care. However, technical language can unintentionally exclude people from full participation. Plain language lexicons are structured sets of commonly understood terms and definitions that can help patients understand and consequently engage in scientific research. We co-created plain language lexicons to make genitourinary (GU) cancer research more accessible to patients. Methods: A four-step co-creation process was undertaken collaboratively with patients, advocates, and clinicians: 1) Identify the unmet need via a landscape search to gather available data, tools, and resources; 2) Develop and refine language through key stakeholder interviews and workshops; 3) Scrutinize the lexicons with key stakeholders; 4) Finalize the lexicons to be more inclusive of patient perspectives and improve accessibility of research data. The process was facilitated by Johnson & Johnson to enhance their patient engagement initiatives. Results: The bladder and prostate cancer lexicons included 62 and 84 prioritized terms, respectively, across categories such as diagnosis, treatment, and clinical trials. Examples of plain language terms used are shown in Table 1. Patients prioritized concise, jargon-free descriptions. Clinicians ensured plain language terms retained their intended scientific meaning. Post-rollout, the lexicons have supported researchers in using terms designed to align more closely with patients’ perspectives. The lexicons have been used by cross-functional teams on projects including advisory boards, surveys, and publications. The lexicons also serve as a reminder of the importance of using appropriate language to promote shared decision-making. Conclusions: Co-created plain language lexicons can broaden access to GU cancer research and help position patients as partners in evidence generation. Wider adoption and prospective evaluation, assessing comprehension, trust, and participation, are warranted. Sample terminology from the GU cancer plain language lexicons. Technical term Plain language term Rationale and use Anti-tumor effect Cancer-suppressing effect Avoid ‘war language’ like ‘fighting’ or ‘attacking’ which can be viewed as toxically positive Castration-resistant prostate cancer Prostate cancer that stops responding to hormone-lowering treatment Avoid using ‘castration’ in all cases Complete response No cancer after treatment Simpler language No evidence of disease No signs of cancer Avoid implying a cure or ‘cancer-free,’ which can create unrealistic expectations Radical cystectomy Bladder (and other sexual organ) removal surgery Provide explanation of the impact of radical cystectomy beyond the bladder, impacting quality of life