Background Social networks such as Twitter offer the clinical research community a novel opportunity for engaging potential study participants based on user activity data. However, the availability of public social media data has led to new ethical challenges about respecting user privacy and the appropriateness of monitoring social media for clinical trial recruitment. Researchers have voiced the need for involving users’ perspectives in the development of ethical norms and regulations. Objective This study examined the attitudes and level of concern among Twitter users and nonusers about using Twitter for monitoring social media users and their conversations to recruit potential clinical trial participants. Methods We used two online methods for recruiting study participants: the open survey was (1) advertised on Twitter between May 23 and June 8, 2017, and (2) deployed on TurkPrime, a crowdsourcing data acquisition platform, between May 23 and June 8, 2017. Eligible participants were adults, 18 years of age or older, who lived in the United States. People with and without Twitter accounts were included in the study. Results While nearly half the respondents—on Twitter (94/603, 15.6%) and on TurkPrime (509/603, 84.4%)—indicated agreement that social media monitoring constitutes a form of eavesdropping that invades their privacy, over one-third disagreed and nearly 1 in 5 had no opinion. A chi-square test revealed a positive relationship between respondents’ general privacy concern and their average concern about Internet research (P<.005). We found associations between respondents’ Twitter literacy and their concerns about the ability for researchers to monitor their Twitter activity for clinical trial recruitment (P=.001) and whether they consider Twitter monitoring for clinical trial recruitment as eavesdropping (P<.001) and an invasion of privacy (P=.003). As Twitter literacy increased, so did people’s concerns about researchers monitoring Twitter activity. Our data support the previously suggested use of the nonexceptionalist methodology for assessing social media in research, insofar as social media-based recruitment does not need to be considered exceptional and, for most, it is considered preferable to traditional in-person interventions at physical clinics. The expressed attitudes were highly contextual, depending on factors such as the type of disease or health topic (eg, HIV/AIDS vs obesity vs smoking), the entity or person monitoring users on Twitter, and the monitored information. Conclusions The data and findings from this study contribute to the critical dialogue with the public about the use of social media in clinical research. The findings suggest that most users do not think that monitoring Twitter for clinical trial recruitment constitutes inappropriate surveillance or a violation of privacy. However, researchers should remain mindful that some participants might find social media monitoring problematic when connected with certain conditions or health topics. Further research should isolate factors that influence the level of concern among social media users across platforms and populations and inform the development of more clear and consistent guidelines.
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Evaluation of Consent to Link Twitter Data to Survey Data
This study presents an initial framework describing factors that could affect respondents’ decisions to link their survey data with their public Twitter data. It also investigates two types of factors, those related to the individual and to the design of the consent request. Individual-level factors include respondents’ attitudes towards helpful behaviours, privacy concerns and social media engagement patterns. The design factor focuses on the position of the consent request within the interview. These investigations were conducted using data that was collected from a web survey on a sample of Twitter users selected from an adult online probability panel in the United States. The sample was randomly divided into two groups, those who received the consent to link request at the beginning of the survey, and others who received the request towards the end of the survey. Privacy concerns, measures of social media engagement and consent request placement were all found to be related to consent to link. The findings have important implications for designing future studies that aim at linking social media data with survey data.
more » « less- NSF-PAR ID:
- 10400129
- Publisher / Repository:
- Oxford University Press
- Date Published:
- Journal Name:
- Journal of the Royal Statistical Society Series A: Statistics in Society
- Volume:
- 185
- Issue:
- Supplement_2
- ISSN:
- 0964-1998
- Page Range / eLocation ID:
- p. S364-S386
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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The Study on U.S. Parents’ Divisions of Labor During COVID-19 (SPDLC) collects longitudinal survey data from partnered U.S. parents that can be used to assess changes in parents’ divisions of domestic labor, divisions of paid labor, and well-being throughout and after the COVID-19 pandemic. The goal of SPDLC is to understand both the short- and long-term impacts of the pandemic for the gendered division of labor, work-family issues, and broader patterns of gender inequality.
Survey data for this study is collected using Prolifc (www.prolific.co), an opt-in online platform designed to facilitate scientific research. The sample is comprised U.S. adults who were residing with a romantic partner and at least one biological child (at the time of entry into the study). In each survey, parents answer questions about both themselves and their partners. Wave 1 of SPDLC was conducted in April 2020, and parents who participated in Wave 1 were asked about their division of labor both prior to (i.e., early March 2020) and one month after the pandemic began. Wave 2 of SPDLC was collected in November 2020. Parents who participated in Wave 1 were invited to participate again in Wave 2, and a new cohort of parents was also recruited to participate in the Wave 2 survey. Wave 3 of SPDLC was collected in October 2021. Parents who participated in either of the first two waves were invited to participate again in Wave 3, and another new cohort of parents was also recruited to participate in the Wave 3 survey. This research design (follow-up survey of panelists and new cross-section of parents at each wave) will continue through 2024, culminating in six waves of data spanning the period from March 2020 through October 2024. An estimated total of approximately 6,500 parents will be surveyed at least once throughout the duration of the study.
SPDLC data will be released to the public two years after data is collected; Waves 1 and 2 are currently publicly available. Wave 3 will be publicly available in October 2023, with subsequent waves becoming available yearly. Data will be available to download in both SPSS (.sav) and Stata (.dta) formats, and the following data files will be available: (1) a data file for each individual wave, which contains responses from all participants in that wave of data collection, (2) a longitudinal panel data file, which contains longitudinal follow-up data from all available waves, and (3) a repeated cross-section data file, which contains the repeated cross-section data (from new respondents at each wave) from all available waves. Codebooks for each survey wave and a detailed user guide describing the data are also available. Response Rates: Of the 1,157 parents who participated in Wave 1, 828 (72%) also participated in the Wave 2 study. Presence of Common Scales: The following established scales are included in the survey:- Self-Efficacy, adapted from Pearlin's mastery scale (Pearlin et al., 1981) and the Rosenberg self-esteem scale (Rosenberg, 2015) and taken from the American Changing Lives Survey
- Communication with Partner, taken from the Marriage and Relationship Survey (Lichter & Carmalt, 2009)
- Gender Attitudes, taken from the National Survey of Families and Households (Sweet & Bumpass, 1996)
- Depressive Symptoms (CES-D-10)
- Stress, measured using Cohen's Perceived Stress Scale (Cohen, Kamarck, & Mermelstein, 1983)
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In the second stage, a new sample of parents was recruited. New parents had to meet the same sampling criteria as in W1 (be at least 18 years old, reside in the United States, reside with a romantic partner, and be a parent living with at least one biological child). Also similar to the W1 procedures, we oversampled men, Black individuals, individuals who did not complete college, and individuals who identified as politically conservative to increase sample diversity. A total of 1,207 parents participated in the W2 survey. Data quality checks led to the removal of 5.7% of the respondents, resulting in a final sample size of new respondents at Wave 2 of 1,138 parents.
In both stages, participants were informed that the survey would take approximately 20 minutes to complete. All panelists were provided monetary compensation in line with Prolific’s compensation guidelines, which require that all participants earn above minimum wage for their time participating in studies.
To be included in SPDLC, respondents had to meet the following sampling criteria at the time they enter the study: (a) be at least 18 years old, (b) reside in the United States, (c) reside with a romantic partner (i.e., be married or cohabiting), and (d) be a parent living with at least one biological child. Follow-up respondents must be at least 18 years old and reside in the United States, but may experience changes in relationship and resident parent statuses. Smallest Geographic Unit: U.S. StateThis work is licensed under the Creative Commons Attribution 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/. In accordance with this license, all users of these data must give appropriate credit to the authors in any papers, presentations, books, or other works that use the data. A suggested citation to provide attribution for these data is included below:
To help provide estimates that are more representative of U.S. partnered parents, the SPDLC includes sampling weights. Weights can be included in statistical analyses to make estimates from the SPDLC sample representative of U.S. parents who reside with a romantic partner (married or cohabiting) and a child aged 18 or younger based on age, race/ethnicity, and gender. National estimates for the age, racial/ethnic, and gender profile of U.S. partnered parents were obtained using data from the 2020 Current Population Survey (CPS). Weights were calculated using an iterative raking method, such that the full sample in each data file matches the nationally representative CPS data in regard to the gender, age, and racial/ethnic distributions within the data. This variable is labeled CPSweightW2 in the Wave 2 dataset, and CPSweightLW2 in the longitudinal dataset (which includes Waves 1 and 2). There is not a weight variable included in the W1-W2 repeated cross-section data file.
Carlson, Daniel L. and Richard J. Petts. 2022. Study on U.S. Parents’ Divisions of Labor During COVID-19 User Guide: Waves 1-2.
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Background Internet data can be used to improve infectious disease models. However, the representativeness and individual-level validity of internet-derived measures are largely unexplored as this requires ground truth data for study. Objective This study sought to identify relationships between Web-based behaviors and/or conversation topics and health status using a ground truth, survey-based dataset. Methods This study leveraged a unique dataset of self-reported surveys, microbiological laboratory tests, and social media data from the same individuals toward understanding the validity of individual-level constructs pertaining to influenza-like illness in social media data. Logistic regression models were used to identify illness in Twitter posts using user posting behaviors and topic model features extracted from users’ tweets. Results Of 396 original study participants, only 81 met the inclusion criteria for this study. Of these participants’ tweets, we identified only two instances that were related to health and occurred within 2 weeks (before or after) of a survey indicating symptoms. It was not possible to predict when participants reported symptoms using features derived from topic models (area under the curve [AUC]=0.51; P=.38), though it was possible using behavior features, albeit with a very small effect size (AUC=0.53; P≤.001). Individual symptoms were also generally not predictable either. The study sample and a random sample from Twitter are predictably different on held-out data (AUC=0.67; P≤.001), meaning that the content posted by people who participated in this study was predictably different from that posted by random Twitter users. Individuals in the random sample and the GoViral sample used Twitter with similar frequencies (similar @ mentions, number of tweets, and number of retweets; AUC=0.50; P=.19). Conclusions To our knowledge, this is the first instance of an attempt to use a ground truth dataset to validate infectious disease observations in social media data. The lack of signal, the lack of predictability among behaviors or topics, and the demonstrated volunteer bias in the study population are important findings for the large and growing body of disease surveillance using internet-sourced data.more » « less
