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National Studies Panel

October 17, 2018

Courtney Blackwell, PhD

Courtney K. Blackwell, PhD

Research Assistant Professor in the Department of Medical Social Sciences, Northwestern University’s Feinberg School of Medicine; Person Reported Outcomes (PRO) Core, Environmental Influences on Child Health Outcomes (ECHO) Program

Michael Robb, PhD

Michael Robb, PhD

Senior Director of Research, Common Sense Media

Lindsay Squeglia, PhD

Lindsay Squeglia, PhD

Co-leader of Medical University of South Carolina’s site for the Adolescent Brain Cognitive Development Study (ABCD), Co-Chair of the ABCD Mobile Technology Workgroup


Dr. Blackwell: The Environmental influences on Child Health Outcomes (“ECHO”) Research Program is a seven-year study that began in 2016.  It is funded by the National Institutes of Health, and is a large research consortium of 84 pre-existing pediatric cohorts, representing about 50,000 children and 40,000 mothers and other caregivers in 40 states and Puerto Rico.  The oldest cohort’s members were born in the late 1970s and the youngest haven’t been born yet. The goal of this program is to advance scientific understanding to inform high-impact programs, policies, and practices that improve child and adolescent health.  To do this, ECHO is harmonizing extant data and standardizing new data collection among its constituent cohorts (using an ECHO-wide Protocol).

The environmental factors that ECHO is considering range from biology to society.  They include chemical pollutants (in the air, at home, at school, and in neighborhoods); societal conditions such as stress, maltreatment, and neighborhood conditions; psychosocial considerations including home environment, caregiver behavior, and peer relationships; and such behavioral attributes as sleep, diet and nutrition, and media. Biological samples include blood (including a sample appropriate for DNA), urine, hair, and toenails from children and their biological mothers, and DNA from biological fathers where available.

ECHO is concerned principally with five main categories of child health outcomes: pre-, peri-, and post-natal outcomes; upper- and lower-airways (e.g.,  asthma); obesity; neurodevelopment (e.g., general cognition, emotional and behavioral functioning, social cognition); and positive child health, which focuses on evaluating health assets (versus disease, risk, impairment) that enable well-being.

New measure development is one aspect of ECHO. The Person Reported Outcomes (PRO) Core (MPIs Cella & Gershon) is currently extending the Patient-Reported Outcome Measurement Information System (PROMIS®) to early childhood though the development of novel parent-proxy report measures to evaluate 1- to 5-year-olds’ health outcomes across a range of domains (e.g., sleep, physical activity, anxiety, depressive symptoms, peer and family relationships, self-regulation, engagement/approaches to learning). Another advancement is the developmental extension of the NIH Toolbox cognition tasks to account for current floor effects for the youngest children and children with developmental delays and differing abilities. ECHO is also developing and validating a short form and computer adaptive testing (“CAT”) technology for the Social Responsiveness Scale (“SRS-2”). Additionally, given the diversity of cohorts and their extant data, harmonization efforts including score-linking studies will enable common metrics across different instruments that evaluate the same core constructs.

ECHO also includes validation for new media measures. Existing ECHO data primarily focuses on time spent watching television and/or screen time as a proxy for sedentary behavior. New data collected as part of the ECHO-wide Protocol incorporates multiple additional media platforms, including tablets, computers, and video games, and goes beyond screen time to capture important information on types of activities and type of content (e.g., educational, entertainment). Several cohorts are also looking more deeply at specific media content as well as co-use.  While ECHO does not require the collection of media data, nearly half of the cohorts plan on collecting it.

Technology is also playing a role in ECHO’s data collection process.  Such tools as the NIH Toolbox App are permitting the administration of tablet-based cognition tasks, person-reported outcome measures (“PROs”), and CATs. Several cohorts are also leveraging wearables such as wristwatch-style accelerometers and ActiGraph technology to obtain data on physical activity and sleep patterns for pregnant women and children.

Given these attributes, ECHO represents a unique opportunity.  It also poses a challenge: with all this data, what topics are critical to explore, and what questions must be answered?

Dr. Squeglia: The Adolescent Brain Cognitive Development (ABCD) Study is the largest long-term study of brain development and child health in the United States.  It is funded by the National Institutes of Health (NIH) and operates through 21 data collection sites across the country and a coordinating center in San Diego.  Children enter the study from ages 9.00 to 10.99. Their baseline assessment includes six to eight hours of child self-report questionnaires, cognitive tasks, a clinical interview, and magnetic resonance imaging, including structural and functional (resting-state and task-based) imaging.  Baseline medical assessment includes drug, hormone, and DNA testing. ABCD also collects baby teeth to assess exposure to environmental toxins in utero.  Parents are involved in three hours of this onboarding process.  They answer questions about themselves and their children and participate in a clinical interview.  The entire process, for parents and children, repeats every six months via phone, with annual in-person follow-up visits for 10 years, including neuroimaging every other year. Recruitment occurred from September 2016 to October 2018, and 11,874 participants completed the baseline protocol, including 2,100 twins or triplets.  For the final sample, 50% are White, 15% are Black, 22% are Hispanic, 2% are Asian, and 11% represent other ethnicities.   Enrollment is now closed.  The plan for the ABCD Study is to follow this cohort for at least ten years

The ABCD Study is funded through multiple institutes of the National Institutes of Health, but it is being run through the National Institute of Drug Abuse.  Its original purpose was to understand how using cannabis, alcohol, and other substances affects brain development; however, the scale and character of the study lends itself to broader inquiry.  For example, study participants receive Fitbit wearables to obtain heart rate, physical activity (e.g., steps per day), and sleep data.  Questionnaires are used to obtain baseline data from children and their parents about screen time and the specific nature of their individual and social digital media activities.  Various apps for monitoring digital media use are being piloted for incorporation into the ABCD Study.  Future research with the ABCD cohort will include social networking, environmental sensors, biosensors (to measure drug abuse), and GPS monitoring for subjects over 18.  These must be integrated into the study as a whole, and implemented in ways that minimize the burden on study participants.

Data privacy and personal choice are important considerations in this context.  The study team wants subjects to have a choice about what data is collected from (and about) them.  There is a concern that children who intend to share their information with the ABCD study will inadvertently share it with others through commercial apps.  

ABCD study data is widely available through the National Data Archive website.  This is curated, cross-sectional data from half of the baseline. Longitudinal data is to come.

Dr. Robb: Common Sense Media released its latest survey-based national study in September 2018.    Over 1,100 US children, aged 13 to 17, participated. Common Sense used focus groups to determine which social media sites to include in its questionnaire, and to learn more about how teens perceive their social media use.  Households without Internet access were provided with tablet or Internet-connected laptops in order to take the survey.

Common Sense used GFK Knowledge Networks to conduct its survey.  That firm employed address-based sampling to recruit participants constituting a stratified random sample of the United States, and then used weighting techniques to create a representative population (by reference to US Census data).  This provided greater external validity than a non-probability or convenience sample.

The Common Sense survey has a number of inherent methodological limitations.  As a cross-sectional study, it cannot show causation. It relies on teens’ self-reporting. Common Sense ran the same study in 2012, so although the current study can be used to track population-level changes in social media use and attitudes, it is not technically a longitudinal study since it does not use the same participants. Non-response bias is another issue affecting the quality of this data.

The first major finding of the 2018 Common Sense Media Survey is an increase in the frequency with which teens are using media.  The number of teen users has not changed dramatically since the 2012 survey, but the percentage using social media multiple times a day has increased from 34% to 70% (many of whom say that they use social media almost constantly).  That coincides with an increase in teens’ smartphone ownership (from 41% in 2012 to 89% in 2018).

Teens have a mixed record when it comes to self-regulating their device use.  Just over half turn off, silence, or put away their phones all or most of the time when they go to sleep, and a little less than a third do so when doing homework.  More than a quarter of them report being awakened during the night by calls, texts, or other notifications.  Just 16% make themselves unavailable in this way when they hang out with friends. Most respondents acknowledged that social media distracts them when they should be doing homework or paying attention to other people.  Almost half (44%) get frustrated by their friends’ device use.

In 2012, 49% of teens in the Common Sense Survey listed face-to-face conversation as their favorite way to communicate with friends.  That number sank to 32% in 2018. The relative preference for texting rose slightly between surveys (from 33% to 35%), but the differences were more dramatic for social media (up from 7% to 16%) and for video chat (up from 2% to 10%).  

Only a very few teens say that using social media has a negative effect on how they feel about themselves; many more say it has a positive effect.  With respect to confidence, depression, loneliness, and general self-regard, only 20% to 25% reported that social media use made them feel better or worse, with the rest saying it did not have an effect either way.  Of those who did report positive or negative effects, though, a high proportion reported positive effects (more confident, less depression, less loneliness, and generally a better sense of self-worth). This pattern is heightened among teens with low socioemotional wellbeing; however, that vulnerable group also are substantially more likely to report negative social media experiences than their less vulnerable peers.  Broadly speaking, they are having heightened positive and negative reactions to social media.

Teens’ own interpretations of their feelings about social media should not be our only metric.  Nor is the Common Sense Survey the only valuable resource on these topics. Other resources include The Pew Research Center’s recent teen social media and technology survey, the Hope Lab study on digital health practices, and the AP NORC survey.

Questions and Answers

Audience Question: Does Common Sense Media also survey participating teens’ parents regarding their children’s social media lives?

Dr. Robb: No.  Common Sense surveys parents about their own overall media use.   It shows that parents invest roughly the same amount of time in media use as their kids do. They express concerns about time and content online, and cyberbullying.

Dr. Blackwell: ECHO includes children 0-8.  There some studies about whether media is helpful, hurtful, or neither for children, and parents’ attitude about that.  When parents think that media neither help nor harm children, their kids are higher volume media consumers and they aren’t using higher-quality media.  Because of the ages involved, though, that’s not so much about social media.

Dr. Squeglia: Starting in Year 2, the ABCD Study will be gathering parent reports on how problematic they think their child’s screen and digital media use is.

Audience Question (Larry Rosen, PhD): In the Common Sense Media charts, none of them added up to 100%.  Is the middle just neither?

Dr. Robb: When survey respondents are forced to choose between whether social media affect them positively or negatively, they’re more likely to say that it’s positive.  Most though, say that it doesn’t seem to affect them one way or another.

Audience Question: What about mischievous responders?

Dr. Robb: It’s hard to filter out mischievous responders.  There are some clues, such as how quickly they rush through a survey, with which to eliminate outliers.  Beyond that, there are no specific tools.

Dr. Blackwell: A panel service recruits participants.  The survey isn’t being sent outside that core group.  The ECHO study has had issues when it’s used Facebook to recruit paid participants.  (Overnight surges of interest suggest that it’s not coming from real people.) So, participants may be biased, but the panel service does a pretty good job of recruiting.

Dr. Robb: People who’ve already agreed to participate in these panels get a little monetary compensation for actually doing so.

Audience Question (Marc Potenza, PhD, MD): The ABCD Study’s plan to collect more data on types and patterns of screen time usage is a positive.  Are there opportunities to collect data on how children and adolescent are viewing pornography and how that’s impacting their lives?

Dr. Squeglia: The kids in the ABCD Study now are 9 and 10 years old.  Some of their parents are already upset about questions regarding substance abuse.  Those questions involve a lot of branching logic, in which the first question is, “Have you ever heard of (a particular substance)” There are only follow up questions if that first answer is “yes”.  Even so, some parents get upset. The subject of pornography will be raised in future waves of the study, as these children approach older age.

Audience Question: For the ABCD Study, what tools are being considered for the passive collection of screen use data for different media platforms?

Dr. Squeglia: The ABCD Study won’t be using commercial apps for the passive collection of screen use data.  This is a longitudinal study, and reliance on a commercial entity that might get bought out someday could be problematic.  Privacy and control over data access are also concerns. A number of options are under consideration, including both “open platform” products and the in-house option.  Suggestions are welcome.

Dr. Robb: Someone demonstrated a passive data capture device that works through the TV and a mobile device.  Common Sense Media is eager to incorporate that when it’s done.

Dr. Squeglia: A lot of apps are available only for Android or iPhone.  We need something that can output in the same way on both platforms.

Audience Question (Dan Anderson, PhD): We hear that media technology is changing rapidly.  There is bound to be significant secular change in the media that kids use during the course of a longitudinal study.  The projection regarding virtual reality adoption come to mind. How are the longitudinal studies accounting for this, to empower future investigators?

Dr. Blackwell: ECHO plans to amend its protocol continuously. This process will take new technologies, new measures, and other changes into account. This long, large study also creates opportunities to compare data before and after such changes.

Dr. Squeglia: ABCD already has amended its protocols for Years 1 and 2.  It will continue to make changes, depending on the changing state of technology.

Audience Question (Charles Czeisler, PhD, MD): Is Common Sense Media still tracking the amount of time that children are spending on media each day?

Dr. Robb: Yes.  Common Sense has a series of reports, specifically on media tracking, for children zero to eight (2017) and between 8 and 18 (2015).  The later will be done again in a year or two. It also has such a report on parents.

Audience Question (Karen Heffler, MD): What digital information is ECHO collecting in the first three years of life?  Is it looking at any autism-specific outcomes?

Dr. Blackwell: ECHO is addressing basic questions of access and use, and some questions of content.  It’s relying on parent reports at this point. Some cohorts are looking more deeply (for example, with media diaries).  One cohort is starting at age four months and asking parents about their media use through tablets, and getting very specific about content and co-use.  Regarding autism, the SRS is required of all participants in the main cohort (probably starting at age 2 or 3), so there definitely will be some data on that outcome. There are also pockets within ECHO looking at other social cognition in autism.  For example, Craig Newschaffer, PhD has 16 ECHO cohorts.

Session Materials