Adult Cancer Survivors' Engagement and Interest in Patient-Centered Research

Abstract

Background: Limited information is available about the representativeness of survivors engaging in patient-centered research, despite the potential for threats to generalizability. We thus aimed to assess the representativeness of survivors engaged or interested in research development.Methods: We used data from the Health Information National Trends Survey, a nationally representative survey, to identify survivors of adult cancers. Our outcomes of interest were based on responses to questions about engagement or interest in developing patient-centered research. We estimated the ratio of relative frequencies (RRF) and corresponding 95% confidence limits (CL) of sociodemographic and survivorship characteristics between survivors engaged or interested in patient-centered research and the overall survivor population.Results: Our study population comprised 934 survivors, of whom 5% reported being engaged in patient-centered research and 26% reported an interest in participating. Relative frequencies of characteristics were discordant for engaged survivors but largely similar for interested survivors compared with all survivors. In particular, engaged survivors had a higher relative frequency of individuals ages 50 to 64 years (RRF ¼ 1.7; 95% CL, 1.1-2.5), Hispanic (RRF ¼ 2.9; 95% CL, 1.2-6.9), non-Hispanic Black (RRF ¼ 2.9; 95% CL, 1.1-2.5), and unemployment (RRF ¼ 4.7; 95% CL, 1.4-16).Conclusions: We observed several meaningful differences in the characteristics of survivors engaged in patient-centered research compared with all survivors, which raises concerns about the generalizability of findings from such studies.Impact: Patient-centered research may not benefit the broader survivor community if survivors engaging in research development are not representative of all survivors. Greater attention to recruiting mechanisms is necessary to avoid creating disparities.

Pragmatic Patient Engagement in Designing Pragmatic Oncology Clinical Trials

“…Similar to trends in survivorship, clinical trials on survivorship have also increased during the past two decades [69][70][71][72][73]. Yet, only 5 percent of cancer survivors were engaged in these trials, although 26 percent of survivors reported willingness to be involved [70]. Most of these trials used a conventional approach, emphasizing investigator-identified priorities rather than a patientcentered approach [74,75].…”

“…This trend of improved survival is mainly due to advances in cancer diagnostic technology and therapeutics resulting from cancer science and trials [68]. Similar to trends in survivorship, clinical trials on survivorship have also increased during the past two decades [69][70][71][72][73]. Yet, only 5 percent of cancer survivors were engaged in these trials, although 26 percent of survivors reported willingness to be involved [70].…”