Evaluating Survey Consent to Social Media Linkage in ......• Social media data are available and...

© 2018 by the Regents of the University of Michigan

Evaluating Survey Consent to

Social Media Linkage in Health Surveys

Zeina Mneimneh, Colleen McClain,

Trivellore Raghunathan

HSRMC

March 4-7 , 2020

Williamsburg, VA


Twitter Use in Health Research

• Social media data are “available” and the use of social media among the general population has been increasing over time

• The “real-time” and organic nature of the data could provide an unprecedented opportunity to investigate human behaviors and attitudes in a cost-effective manner

• One of the social media platforms that provides publically available and accessible data to researchers is Twitter

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• Sinnernberg, et al., 2017: “Twitter as a Tool for Health Research A Systematic Review”

• Systematically reviewed published papers between 2010 to 2015 that used Twitter data to study health related topic

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Most common topics studied: public health, infectious disease, behavioral medicine, psychiatry

Sinnernberg, et al., 2017: Twitter as a Tool for Health Research A Systematic Review 4



Sinnernberg, et al., 2017: Twitter as a Tool for Health Research A Systematic Review 5


Who generates Twitter data ?

• Twitter users do not represent the US population

– Twitter users are generally younger, more highly education, and wealthier than the general adult US population (Pew, 2019)

• The bigger challenge is that 80% of the tweets generated in the US come from only 10% of the users (Pew, 2018)

– Who is represented in a specific sample of tweets will vary depending on the topic and time of discourse

• Conducting research that will shed light on the data generation process will be essential for advancing health-related research that is based on digital trace data such as Twitter.

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Linking Multiple data sources

• One promising line of research is the one that links multiple sources of data together

• This requires consenting users to such a linkage request, especially since…

– User information on Twitter is very thin

– Linking public Twitter data to additional user data will allow researchers to gather or predict information about users that the user might not have intended to share

• This presentation focuses on consenting survey respondents to provide their Twitter handles

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Why investigate consent ?

– To identify potential factors that are associated with consent

• Maximize the value of linked data

– To investigate potential consent biases if substantive analysis is restricted to consented sub-samples

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Linkage Framework

• Exiting social media linkage framework (?)– Description of consent rates mainly (Al Baghal et. al 2018; Guess et al. 2018; Ochoa C.,

& Revilla M. 2018; Revilla M., Couper M. P., & Ochoa C. , 2018; Wagner E., Pasek J. & Stevenson, 2015)

– Limited predictors of consent mainly demographics and mode (Baghal, et. al, 2019)

• Administrative linkage framework (Beninger et. al 2017; Sakshaug et. al 2012)

– Factors include • Survey design features ( e.g. consent language, placement, mode,

type of request)• Social/environmental (e.g. overall attitudes towards privacy)• Individual factors ( e.g. psychographics, acquiescence, comprehension

of request, relevance of task, privacy concerns, experience with organization collecting data)

– Similarities and differences

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• Psychographics:– Altruism or Helping behavior

• Comprehension of consent request: literacy and cognitive ability– Age – Education

• Relevance to individual– Number of social media sites used– Profile information shared on Twitter– Frequency of using Twitter

• (Lack of) Privacy concerns (?)– Reporting of sensitive information ( e.g. Income, alcohol use disorder)

Linkage Framework: Factors Applicable to Twitter Linkage- Individual Related Factors

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Three Case Studies: Case Study 1

• College Survey on mental health in Belgium, KU Leuven

– New and returning students ( N completes =1615)

– Web survey

– Consent question at the end

– 36% use Twitter

– 24 % consentedAs part of this project, the research team would like to

understand how survey responses relate to social

media content. To help us explore this, we would like to

ask your permission to collect your public Twitter profile

and tweets and analyze them for research purposes.

Your consent is completely voluntary and your social

media information will be kept confidential and stored in

a password protected database.*Do we have your

permission? 11


• National Address-Based Sample of US for a well-being study

– Mail to web (N completes=1888)


– 20.1% use Twitter

– 27.0 % consented

We are interested in learning whether people’s Twitter feed

is informative of demographic characteristics and combining

Twitter data with the survey data will help us study the

relationship. Although we might get identifiable information

about you from your Twitter

account, we will not reveal your identity to anyone outside

the research team and we will not report the information

from this survey in a way that your identity would be

revealed. We will not use the information from your Twitter

account for any other purposes.

For research purposes, would you allow us to combine

information from your Twitter feed with responses from this

survey?


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• National Face-to-Face mental health survey in Saudi Arabia

– Subsample (N completes=1048)


– 23.0% use Twitter

– 45% consentedWe appreciate the time you have taken to answer the survey

questions.

As part of this survey, we would like to ask your permission to

link your public twitter information to your interview information.

This information will be kept confidential and will only be used for

academic purposes at an aggregate level. That is no information

will be disclosed on any individual respondent in any research

report or publication. Your consent is completely voluntary.

Your permission will be extremely valuable for understanding

how people are using Twitter.

Do we have your permission?


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Health Differences between consenters vs. nonconsenter*

Regression Coefficients and 95% Confidence Interval

*Each outcome is regressed on consent and significant correlates of consent

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Conclusion • “Relevance” to R

– Respondents who use more social media sites and those who use twitter more frequently were more likely to consent

– Potentially those who share certain profile information are more likely to consent

• Common predictor mechanism, general willingness to share information with others (?)

• (Lack of) privacy concerns – Respondents who reported symptoms of alcohol use

disorder were more likely to consent • Common predictor mechanism, such as sharing sensitive

information with others (?)

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Conclusion • Health Behaviors are not related to consent

– Limiting our analysis to consenters does not seem to be biased

– How can we increase consent rate without biasing the sub-sample of consenters

• Phase II– Survey designed to investigate consent to Twitter linkage

– Value to Survey: What information is gleaned from Twitter to supplement survey data

– Value to Twitter data: • Who is generating what data

• Creating linked data for predicting users characteristics and prediction accuracy across different sub-groups 19


THANK YOUE-mail: [email protected]

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EXTRA Slides • Helping Behavior 1 items: During the past 12 month, how often have you…

…donated blood?…given food or money to a homeless person? …returned money to a cashier after getting too much change?…done volunteer work for a charity? …given money to a charity?…given directions to a stranger?…spent time talking with someone who was a bit down or depressed?

• Helping Behavior 2 items: During the past 12 month, how often have you…

…offered your seat on a bus or in a public place to a stranger who was standing? …looked after a person's plants, mail, or pets while they were away?…carried a stranger's belongings, like groceries, a suitcase, or shopping bag? …let someone you didn't know well borrow an item of some value like dishes or tools? …helped someone outside of your household with housework or shopping? …lent quite a bit of money to another person?…helped somebody to find a job?

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Evaluating Survey Consent to Social Media Linkage in ......• Social media data are available and...

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