Consent to Data Linkage for Different Data Domains – The Role of Question Order, Question Wording, and Incentives

As our modern world has become increasingly digitalized, various types of data from different data domains are available that can enrich survey data. To link survey data to other sources, consent from the survey respondents is required. This article compares consent to data linkage requests for seven data domains: administrative data, smartphone usage data, bank data, biomarkers, Facebook data, health insurance data, and sensor data. We experimentally explore three factors of interest to survey designers seeking to maximize consent rates: consent question order, consent question wording, and incentives. The results of the study using a German online sample (n = 3,374) show that survey respondents have a relatively high probability of consent to share smartphone usage data, Facebook data, and biomarkers, while they are least likely to share their bank data in a survey. Of the three experimental factors, only the consent question order affected consent rates significantly. Additionally, the study investigated the interactions between the three experimental manipulations and the seven data domains, of which only the interaction between the data domains and the consent question order showed a consistent significant effect.

Feasibility of Monitoring Health and Well-being in Emerging Adults: Pilot Longitudinal Cohort Study

Background Emerging adulthood is a distinct segment of an individual’s life course. The defining features of this transitional period include identity exploration, instability, future possibilities, self-focus, and feeling in-between, all of which are thought to affect quality of life, health, and well-being. A longitudinal cohort study with a comprehensive set of measures would be a valuable resource for improving the understanding of the multifaceted elements and unique challenges that contribute to the health and well-being of emerging adults. Objective The main aim of this pilot study was to evaluate the feasibility and acceptability of recruiting university graduates to establish a longitudinal cohort study to inform the understanding of emerging adulthood. Methods This pilot study was conducted among graduates at a large university. It involved collecting web-based survey data at baseline (ie, graduation) and 12 months post baseline, and linking survey responses to health records from administrative data collections. The feasibility outcome measures of interest included the recruitment rate, response rate, retention rate, data linkage opt-out rate, and availability of linked health records. Descriptive statistics were used to evaluate the representativeness of the sample, completeness of the survey responses, and data linkage characteristics. Results Only 2.8% of invited graduates (238/8532) agreed to participate in this pilot cohort study, of whom 59.7% (142/238) responded to the baseline survey. The retention rate between the baseline and follow-up surveys was 69.7% (99/142). The completeness of the surveys was excellent, with the proportion of answered questions in each survey domain ranging from 87.3% to 100% in both the baseline and follow-up surveys. The data linkage opt-out rate was 32.4% (77/238). Conclusions The overall recruitment rate was poor, while the completeness of survey responses among respondents ranged from good to excellent. There was reasonable acceptability for conducting data linkage of health records from administrative data collections and survey responses. This pilot study offers insights and recommendations for future research aiming to establish a longitudinal cohort study to investigate health and well-being in emerging adults. Trial Registration Australian New Zealand Clinical Trials Registry number ACTRN12618001364268; https://tinyurl.com/teec8wh International Registered Report Identifier (IRRID) RR2-10.2196/16108

The impact of vaccination on incidence and outcomes of SARS-CoV-2 infection in patients with kidney failure in Scotland

Background Patients with kidney failure requiring kidney replacement therapy (KRT) are at high risk of complications and death following SARS-CoV-2 infection with variable antibody responses to vaccination reported. We investigated the effects of COVID-19 vaccination on incidence of infection, hospitalization and death of COVID-19 infection. Methods Study design was an observational data linkage cohort study. Multiple healthcare datasets were linked to ascertain all SARS-CoV-2 testing, vaccination, hospitalization, and mortality data for all patients treated with KRT in Scotland, from the start of the pandemic over a period of 20 months. Descriptive statistics, survival analyses and vaccine effectiveness were calculated. Results As of 19th September 2021, 93% (n=5281) of the established KRT population in Scotland had received two doses of an approved SARS-CoV-2 vaccine. Over the study period, there were 814 cases of SARS-CoV-2 infection (15.1% of the KRT population). Vaccine effectiveness against infection and hospitalization was 33% (95% CI 0-52) and 38% (95% CI 0-57) respectively. 9.2% of fully vaccinated individuals died within 28 days of a SARS-CoV-2 positive PCR test (7% dialysis patients and 10% kidney transplant recipients). This compares to <0.1% of the vaccinated Scottish population being admitted to hospital or dying death due to COVID19 during that period. Conclusions These data demonstrate a primary vaccine course of two doses has limited impact on COVID-19 infection and its complications in patients treated with KRT. Adjunctive strategies to reduce risk of both COVID-19 infection and its complications in this population are urgently required.

Archetypes of Digital Twins

Currently, Digital Twins receive considerable attention from practitioners and in research. A Digital Twin describes a concept that connects physical and virtual objects through a data linkage. However, Digital Twins are highly dependent on their individual use case, which leads to a plethora of Digital Twin configurations. Based on a thorough literature analysis and two interview series with experts from various electrical and mechanical engineering companies, this paper proposes a set of archetypes of Digital Twins for individual use cases. It delimits the Digital Twins from related concepts, e.g., Digital Threads. The paper delivers profound insights into the domain of Digital Twins and, thus, helps the reader to identify the different archetypical patterns.