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Background: SMS text messaging- and internet-based self-reporting systems can supplement existing vaccine safety surveillance systems, but real-world participation patterns have not been assessed at scale., Objective: This study aimed to describe the participation rates of a new SMS text messaging- and internet-based self-reporting system called the Kaiser Permanente Side Effect Monitor (KPSEM) within a large integrated health care system., Methods: We conducted a prospective cohort study of Kaiser Permanente Southern California (KPSC) patients receiving a COVID-19 vaccination from April 23, 2021, to July 31, 2023. Patients received invitations through flyers, SMS text messages, emails, or patient health care portals. After consenting, patients received regular surveys to assess adverse events up to 5 weeks after each dose. Linkage with medical records provided demographic and clinical data. In this study, we describe KPSEM participation rates, defined as providing consent and completing at least 1 survey within 35 days of COVID-19 vaccination., Results: Approximately, 8% (164,636/2,091,975) of all vaccinated patients provided consent and completed at least 1 survey within 35 days. The lowest participation rates were observed for parents of children aged 12-17 years (1349/152,928, 0.9% participation rate), and the highest participation was observed among older adults aged 61-70 years (39,844/329,487, 12.1%). Persons of non-Hispanic White race were more likely to participate compared with other races and ethnicities (13.1% vs 3.9%-7.5%, respectively; P<.001). In addition, patients residing in areas with a higher neighborhood deprivation index were less likely to participate (5.1%, 16,503/323,122 vs 10.8%, 38,084/352,939 in the highest vs lowest deprivation quintiles, respectively; P<.001). Invitations through the individual's Kaiser Permanente health care portal account and by SMS text message were associated with the highest participation rate (19.2%, 70,248/366,377 and 10.5%, 96,169/914,793, respectively), followed by email (19,464/396,912, 4.9%) and then QR codes on flyers (25,882/2,091,975, 1.2%). SMS text messaging-based surveys demonstrated the highest sustained daily response rates compared with internet-based surveys., Conclusions: This real-world prospective study demonstrated that a novel digital vaccine safety self-reporting system implemented through an integrated health care system can achieve high participation rates. Linkage with participants' electronic health records is another unique benefit of this surveillance system. We also identified lower participation among selected vulnerable populations, which may have implications when interpreting data collected from similar digital systems., (©Debbie E Malden, Julianne Gee, Sungching Glenn, Zhuoxin Li, Denison S Ryan, Zheng Gu, Cassandra Bezi, Sunhea Kim, Amelia Jazwa, Michael M McNeil, Eric S Weintraub, Sara Y Tartof. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 11.10.2024.)

Background: Despite high infant mortality rates in the United States relative to other developed countries, little is known about survey participation among mothers of deceased infants., Objective: To assess differences in survey response, contact and cooperation rates for mothers of deceased versus. living infants at the time of survey mailing (approximately 2-6 months postpartum), overall and by select maternal and infant characteristics., Methods: We analysed 2016-2019 data for 50 sites from the Pregnancy Risk Assessment Monitoring System (PRAMS), a site-specific, population-based surveillance system of mothers with a recent live birth. We assessed differences in survey participation between mothers of deceased and living infants. Using American Association for Public Opinion Research (AAPOR) standard definitions and terminology, we calculated proportions of mothers who participated and were successfully contacted among sampled mothers (weighted response and contact rates, respectively), and who participated among contacted mothers (weighted cooperation rate). We then constructed multivariable survey-weighted logistic regression models to examine the adjusted association between infant vital status and weighted response, contact and cooperation rates, within strata of maternal and infant characteristics., Results: Among sampled mothers, 0.3% (weighted percentage, n = 2795) of infants had records indicating they were deceased at the time of survey mailing and 99.7% (weighted percentage, n = 344,379) did not. Mothers of deceased infants had lower unadjusted weighted response (48.3% vs. 56.2%), contact (67.9% vs. 74.3%) and cooperation rates (71.1% vs. 75.6%). However, after adjusting for covariates, differences in survey participation by infant vital status were reduced., Conclusions: After covariate adjustment, differences in PRAMS participation rates were attenuated. However, participation rates among mothers of deceased infants remain two to four percentage points lower compared with mothers of living infants. Strategies to increase PRAMS participation could inform knowledge about experiences and behaviours before, during and shortly after pregnancy to help reduce infant mortality., (© 2022 John Wiley & Sons Ltd.)