Furthermore, disparities in electronic PRO capture can harm patients directly. As highlighted in the manuscript by Pugh et al, numerous prior studies have noted racial disparities in symptom burden reporting. Missed opportunities for early toxicity intervention may disproportionately harm racial/ethnic minority and other disenfranchised populations, leading to functional impairment and treatment discontinuation.

The authors suggest many solutions to address these disparities. They recommend integrating PROs more into trials to reduce the burden associated with multiple consent processes. This may be very effective when excessive paperwork is the primary burden, as suggested by research assistants they surveyed. They also recommend addressing technology and access barriers by providing tablets during clinic visits to facilitate electronic PRO capture. This may also prove quite effective in overcoming convenience, internet access, and patient-physician communication barriers. Given that patient knowledge and the views of research assistant have the potential to influence PRO capture, the authors proposed educating patients about the importance of PRO ascertainment in order to increase capture.

Although these solutions may be effective in many cases, additional systems-level solutions may be required to fully address the role that structural discrimination plays in PRO capture disparities.

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When structural racism and other forms of discrimination are considered, the need for systems-level solutions becomes clear. For example, 17.4% of patients declined PROs due to language barriers.1 Given that inequity in PRO capture compromises trial results, funders should allocate resources for PRO translation (or interpreter use where translation is not feasible). Funders could also compensate institutions for the additional manpower required to manually ascertain PROs for patients who decline electronic capture.

Although finances and patient education may partially mitigate PRO capture disparities, they are unlikely to fully address the impact of structural discrimination. For example, disparities in electronic PRO capture and overall PRO consent may signal concerns beyond technology access and proficiency.

Jagsi et al sought patient perspectives on acceptable uses of deidentified health information and found that racial/ethnic minority patients were more likely to place importance on physicians obtaining consent each time deidentified medical records are used for research.8 This suggests that removing barriers to electronic data capture will not fully address the fact that many disenfranchised patients seek increased protections over their data. Broadening consent forms could increase research participation for some, but simultaneously deter participation for others. Future research to mitigate disparities in PRO capture should, therefore, focus on understanding how we created a world in which patients forgo the opportunity to use their own voices. Sustainable solutions likely involve transparently confronting and eliminating the broader societal inequities that encourage the genesis of these disparities.  


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  2. Murthy VH, Krumholz HM, Gross CP. Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA. 2004;291(22):2720-2726. doi:10.1001/jama.291.22.2720
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