Feasibility of collecting patient-generated health data to enhance cancer registry surveillance

Purpose Patient-generated health data (PGHD) can provide information about population-level patterns in health outcomes that patients experience during cancer survivorship. Cancer registries do not collect PGHD as part of routine operations. This study assessed the feasibility of online collection of PGHD to augment cancer registry data. Methods Cancer survivors who (1) were aged 50 or older, (2) had been diagnosed with breast, prostate, or colorectal cancer, and (3) received their diagnosis within 10 years of the study start date were recruited at four Surveillance, Epidemiology, and End Results (SEER) cancer registry program sites. Each site was required to collect PGHD at baseline and a future time point to assess the feasibility of longitudinal methods. All sites collected data through a survey or questionnaire(s); each site employed unique methods to administer their surveys. Results Across the sites, initial recruitment appeared to be the most challenging aspect in establishing a longitudinal cohort from the SEER sampling frame, with participation rates ranging from 3 to 17%. However, once enrolled, the percentage of survivors completing surveys at multiple time points was relatively high, ranging from 48 to 91%. Conclusion Augmenting cancer registry data with longitudinally collected PGHD is feasible, although more work is needed to overcome barriers of initial patient recruitment and adoption of online PGHD collection techniques for public health surveillance. Implications for Cancer Survivors Registry data, including PGHD, can provide the medical community with patient perspectives on treatment effects and quality of life and can offer cancer survivors information about symptom management and advances in research.