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Healthy Behavior Data Challenge
A pilot test using opt-in panel members to test the viability of extracting personal Fitbit data from remote survey respondents.
1 Rating
Source: Robert D Furberg, PhD, MBA
Category: Research Protocol
Protocol Sections: Research Design and Methods
Institution (where approved): RTI International
Created on: January 1, 2018
RESEARCH METHODS: All panelists will receive a unique numeric participant ID from MTurk. Once the panel is confirmed, all 300 panelists will complete a health questionnaire that assesses demographics, general health, physical activity, health tracking processes, and consumer technology. Participants will be asked to enter their unique participant ID into a text box at the start of the questionnaire. At the end of the questionnaire, participants will be queried for their willingness to allow researchers to download their Fitbit data. All varieties and models of Fitbit will be allowed in this study.

Upon consent to Fitbit data access, participants will be routed to a third-party data service provider called Fitabase LLC (San Diego, California). Using the Fitbit application programming interface, third-party services such as Fitabase can access and aggregate self-tracker data. Fitabase provides researchers with a connection to the Fitbit infrastructure to support data collection. The research team will generate unique Fitabase links for each participant. When respondents reach the end of the self-administered survey, they will click on the link to Fitabase that corresponds to their participant ID. Upon completion of the Fitabase sign-up, participants will be given $10 via MTurk Prime's customer service team. Participants who complete the questionnaire but do not sign up with Fitabase will not receive the $1 incentive. Thus, participants who successfully complete the survey and donate their Fitbit data will receive an incentive totaling $11. We will contract with Fitabase to provide the research team with 30 days of retrospective data from the date of sign-up. Fitabase will be used to extract daily and intraday data from the linked Fitbit accounts. These variables include daily-level data on total steps, distance, calories burned, total sleep time, and daily active versus sedentary time. We will also obtain hourly-level data on calories burned, active versus sedentary time, heart rate, sleep, and step counts. The most granular output, intraday data, will include minute-level step counts. These data will be downloaded as both raw and aggregated files by day, per person. Participants can refuse to participate or cancel registration at any time. Cancellation via MTurk will remove their survey data from the study. In cases of cancellation after data collection is complete, participants will be provided with instructions on how to contact RTI staff to remove their Fitbit data.
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Privacy and confidentiality considerations
Description of confidentiality considerations including information on data access and management
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Source: Jacqueline Kerr, PhD
Category: Research Protocol
Protocol Sections: Risk Management
Institution (where approved): UCSD
Created on : May 5, 2016
We have established an extensive protocol to protect participants’ privacy. We will keep informed consent statements and participant data in separate locked files cabinets so that individuals are not easily connected to the study results. All sensor data will be stored on a firewall and password-protected project server at the University of California, San Diego. To reduce the risk to (and fear of) confidentiality, no identifying data will be collected in the field, only in a secure research laboratory. All subject records and data will be stripped of individual identifiers following data collection. We will assign each person a study ID and all records will be coded with the study ID rather than personal identifiers. The code that links the study ID and the name will be stored in a separate place than the data file until all of the measurements are complete. At that point, the personal information will be destroyed and all analyses will be conducted with the data set that has no personal identifiers. All data will be kept in locked cabinets at the study office, accessible only by investigators and project staff. Participants will also be told about the confidentiality procedures and that they have the right to refuse to answer questions or to terminate their participation in the study at any time without prejudice. If a participant decides to terminate participation all data collected on that individual will be destroyed. In order to protect the confidentiality of third parties, we treat all data with the same data security measures as PHI data. As image data is annotated by research staff, images that show places where a reasonable expectation of privacy is accepted (ie. banks, restrooms, locker rooms, hospitals, and medical and treatment centers) will be deleted. After image data is completely annotated, the image files will be destroyed and only the annotations will be used in data analysis Finally, participant data will not be sold or exchanged with anyone and data sharing as per NIH requirements will be performed within strict protocol-driven procedural guidelines. The PI will assure that all human protections standards are met.
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Phoneliness: Examining the relationship between mobile social media and human connection
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Source: Matthew Pittman, Ph.D.
Category: Research Protocol
Protocol Sections: Specific Aims, Research Design and Methods
Institution (where approved): University of Oregon
Created on : January 1, 2018
Specific Aims:
  • Determine the relationship between loneliness and social media use.
  • Determine the relationship between personality measures and social media use.
  • Determine the relationship between self-reported social media use and actual social media use.

Methods, Materials and Analysis
Method 1: Survey will assess a) personality and loneliness variables, and b) social media use.
Method 2: Phone-tracking (trace) data will record how long participants spend using social media platforms for one month. The company that runs the software is RescueTime (https://www.rescuetime.com/)

  1. First, in class I will introduce the study and explain that it consists of a survey and phone tracking.
  2. I will walk them through the procedure, in class, for how they download the phone tracking software and enter the code assigned with my study, which will be determined by RescueTime the week of. The software will record how many seconds the participant spends on 5 social media apps (Facebook, Snapchat, Twitter, Instagram, and SMS texting) for 1 month. The data will all be anonymous and the phone tracking application will run in the background, so the participants will not receive any notifications or updates until the month is over.
  3. Then that evening I will email the participants a link that evening and they will take the survey on Qualtrics, which should take between 10 and 15 minutes.
  4. I will analyze the survey data using SPSS at some time during the month.
  5. When the month is over, I will email the participants telling them they can delete the RescueTime software from their phones.
  6. I will then analyze the phone-tracking data in SPSS, and compare it to the survey data.

All scales are standardized and currently used in social science literature. They are in the Survey Instrument document.

The data will all be anonymized and quantitatively analyzed in SPSS. I will run correlations, regressions, ANOVAS, and test for moderation and mediation with various dependent variables. The data will be used in my dissertation. The data will be paired between qualtrics and rescuetime by participant last name and randomly assigned a number. Once the two data sets are combined into one, the columns that contain any identifying information (such as last name or email) will be deleted from the data, leaving only the information I want. The emaill addresses will also be cut out and put into a new solo document, which I will use to email participants when the month is over. All participants (not just ones who completed) will be emailed that the study is over and they may delete the application from their phone.
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Mobile Assessment and Monitoring of Daily Experiences
This study aims to identify contextual and dynamic risk factors for meth use and anti-retroviral therapy (ART) nonadherence among HIV+ individuals with comorbid meth use. The study utilizes individual interviews, deliver twice-daily smartphone-based ecological momentary assessment (EMA) surveys, and collect smartphone sensor data (GPS location and activity).
1 Rating
Source: Elizabeth Pasipanodya, PhD
Category: Research Protocol
Protocol Sections: Research Design and Methods
Institution (where approved): University of California San Diego
Created on: November 11, 2017

Our overall objective is to identify the contextual and dynamic risk factors associated with meth use and Antiretroviral Therapy (ART) nonadherence and to develop a machine learning algorithm to help define windows of opportunity to deliver interventions promoting relapse prevention and ART adherence in later studies. In order to identify the risk factors to ART nonadherence and meth use, we shall use a mixed methods approach. In particular, 50 People Living with HIV (PLWH) with comorbid meth use shall participate in individual interviews, complete baseline assessment questionnaires, provide daily responses to brief smartphone surveys over a period of 4 weeks, and provide location and movement data passively collected through electronic GPS devices over the 4-week survey period.

One obstacle to establishing a full understanding of the temporal associations and potential mechanisms between variables, such as meth use, ART adherence, and daily events, has been limitations in observing daily life “as it is lived”. As such, ecological momentary assessment (EMA) has been proposed as an ambulatory data collection technique that, through querying present moment experience multiple times throughout the day, researchers are more closely able to assess temporal relationships between daily life experiences, thoughts, feelings, and behaviors. Consequently, we propose to use EMA via smartphone-delivered surveys to more accurately record the daily events of HIV+ individuals, their experience of stressors, mood, and cravings for substance use and determine their associations with risk for meth use and nonadherence.

Furthermore, with the use of electronic GPS devices, we propose to use contextual data, such as location and activity, to understand how location and spatial patterns of movement are associated with risk for meth use and nonadherence. The novel use of global positioning system (GPS) technology overcomes conceptual and logistical challenges faced by relying on static representations of context, such as a residential address, or inaccurate self-reporting of daily movements when examining the relationship between context and health. Indeed, examinations of GPS information has already begun to elucidate important relationships in studies of HIV and drug use [4, 5].

In this study, variables, such as the number of walking trips taken and time spent at home shall be derived from GPS data. These environmental measures created from GPS analysis will be used in statistical modeling at the group level only, and will not be individually mapped or visualized.

Study Components:

I. Screening Interview

Recruitment staff will conduct a brief phone screen to determine preliminary eligibility. A phone screen is detailed in the attached documents in this IRB application for participants who have previously participated in a research study at the HIV Neurobehavioral Research Program (HNRP) (IRB #081375, #091062, #110089, #160075, #171024). These participants indicated in their signed consent document that they wished to be considered for future research studies.

II. Initial Visit and Individual Interview (up to 3 hours):

The initial visit at the HNRP shall include the completion consent documents, collection of background information, and completion of standard psychosocial measures (many of which are standard at the HNRP and have previously been used in other studies. Specifically, the initial visit battery shall include some of the following measures: Demographics and social background, the MacArthur scale of subjective social status, Ira Wilson Questionnaire, Beliefs related to medications, Supports and barriers to adherence, Promis measures of self-efficacy for managing medications, self-efficacy for managing emotions, and social support, the Perceived stress scale, Meth Reasons for Using, Meth Outcome Expectancies, the Risk assessment battery, the DAST-10, the Functional Assessment of Health Inventory (FAHI), Beck anxiety index (BAI), Beck depression index (BDI), the Adult Hope Scale, the HIV Stigma Scale, and the Smartphone operability scale.

These assessments shall take 1 hour to complete and are included as appendices to this application. This visit shall also include participation in a recorded individual interview, covering topics such as supports and barriers to ART adherence and sobriety, lasting about 1 hour. The script for the individual interview is also included as an attachment to this application.

Additionally, participants shall be oriented to the daily survey phase of the study (which shall involve the completion of two daily smartphone surveys and location/activity tracking) and be familiarized with use of cellphones for daily surveys.

III. Daily EMA Surveys and Passive Collection of Location Data (4 weeks)

Participants will complete two brief daily EMA surveys using either their own mobile phones or provided study smartphones over a period of 4 weeks. Survey links shall be sent out to participants twice daily (morning and evening) at times set to the participants’ preferences. Surveys shall be delivered to the smartphones via a text message link which, when followed, directs to a secure online survey created and run on the SurveyMonkey platform.

These weblinks, delivered by text message, shall be generated to be specific to each participant and data collected through SurveyMonkey shall only have study ID as a participant identifier (participants will also have to enter a unique study id in order to access the surveys). As such, participant responses shall be stored without any identifying information and IP addresses shall not be collected.

The first daily survey shall be completed in the morning and the second in the evening. The morning survey shall take 3 minutes to complete and shall include questions on sleep quality, sleep duration, and mood. The evening survey shall take 5 minutes to complete and shall briefly assess mood, recent meth and other substance use, cravings, daily events, sexual risk behaviors, and ART adherence. As the daily surveys shall be completed online through a secure survey-site, participant responses (including their responses of substance use) shall not be stored locally on the mobile phones. The daily survey items are included as attachments to this IRB application.

In addition to daily surveys, we shall also collect information on activity and GPS location, measured by an electronic GPS device. Participants shall be instructed to wear a GPS device, similar in size and weight to a small cell phone (the QStarz BT-Q1000XT) on a belt around their waist during waking hours (except while bathing or swimming) and to recharge the devices while sleeping. This GPS device shall collect latitude and longitude coordinates as well as the date and time of measurements. To minimize intrusion into daily life and potential embarrassment, participants will be told that they can wear the GPS device under or over their clothing. Such GPS devices have been used by other researchers at UCSD interested in studying the effect of geographical context on physical activity (IRB Protocol #140510 and #150336) and by researchers at other institutions interested in exploring the role of location and movement on substance abuse risk [5].

The daily surveys shall enquire about illicit substance use and location data may capture where substances are obtained/used; however, as these two forms of data shall be collected using separate strategies, in the unlikely event that data are intercepted, these data cannot be linked to each other by third parties. Any potential risk of embarrassment or loss of privacy due to analysis with GPS data shall be mitigated by deriving variables from the GPS data, like the number of places visited or time spent at home. Additionally, environmental measures created from the GPS analysis will be used in statistical modeling at the group level only, and will not be individually mapped or visualized for publication purposes. Furthermore, GPS coordinate data shall not be analyzed at a level finer than that of the census tract. Study variables to be created from GPS data are included in the appendices to this application. The risks of loss of privacy posed by completion of daily surveys and location tracking are anticipated to be no greater than those inherent to daily use of the Internet and of use of GPS devices or devices that allow location services.

IV. Follow-up Visit (1 hour)

Participants will return for a second and final visit at the HNRP after the 4-week survey period. During this visit, participants will complete the feedback questionnaire and return the GPS devices as well as any loaned study phones.
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CORE Webinar - June 2018

How We Built CORE: Lessons Learned and Next Steps
Host: Camille Nebeker, EdD, MS

Dr. Camille Nebeker is an Assistant Professor in the School of Medicine at the University of California, San Diego. Dr. Nebeker is affiliated with the Divisions of Behavioral Medicine and Global Health in the Department of Family Medicine and Public Health. She also holds an adjunct faculty appointment with the San Diego State University Graduate School of Public Health and is an affiliated investigator with the UC San Diego Research Ethics Program. Dr. Nebeker’s research focuses on the design of research/bioethics educational initiatives designed for traditional and non-traditional learners with a goal of trainee’s understanding and appreciation of factors that influence the ethical and responsible conduct of research. Dr. Nebeker is the Principal Investigator of the CORE Project.
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SenseCam and Photographic Devices
Marta Jankowska | Posts: 3

I will be soon embarking on a research project that utilizes SenseCam technology (person worn cameras). The participants in the study will be crossing the border regularly. What are steps I should take to ensure that they do not get into trouble utilizing the technology while engaging in border crossing?
Rubi Linares-Orozco | Posts: 31

Hi Marta,

In response to your question about Sensecam while in transit across the Border.
Several Issues to consider:

1) There have been cases where individuals who captured images at the border were asked to delete them or have their device destroyed. While these have been challenged, no official ruling has been determined. Ultimately it appears that Homeland Security has a lot of freedom to search and seize devices (telephones, cameras, laptops) of those trying to leave and enter the country. Please keep this in mind, as devices that are seized are usually taken for further investigation, therefore your data may not be secured. https://www.aclu.org/news/border-agents-harass-americans-taking-pictures-threaten-smash-cameras

2) Depending on which country you are entering, you should investigate the countries laws and ensure that images captured are not breaking any laws that may place your subject in harms way.

3) Like all other Sensecam research studies, the issue of privacy, mandated reporting, and capturing images of bystanders/non-participants, (especially those holding federal positions) maybe problematic. Having detailed procedures in your research protocol/study design on how these circumstances will either be appropriately handled or not captured, and clear instructions to your research subject on what to do in these situations.
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SenseCam and Photographic Devices
MISST technologies
wearable sensor
informed consent

Dear All,

I am wondering whether any of you have experience w/ the iEAR device being used in research? This device is an audio recorder that ends up recording approximately 10% of all ambient sounds as participants wear the device on their belt. Usually, the researchers do analyses on the transcripts from the recordings to study how subjects talk about situtaions in real life.

My main questions is how have you dealt with the issues of secondary subjects? Would this be reviewed by full committee or expedited review?

What does consent look like ? Is it adequate to have subjects wear a button that states something along the lines of "I may be recording this conversation"? Does the IRB consider whether the state is a 2-party or 1-party consent state? Would your legal consel be involved?

I've attached one paper that briefly touches on the ethics of using the device in research (page 3).

Any insights or guidance would be helpful!

Rubi Linares-Orozco | Posts: 31

From my experience the IRB does take into consideration non-consenting bystanders, and from an IRB perspective, the IRB will want to know what type of data is being captured and the settings the recordings are taking place (private communication), how and the method the data is being captured (audio only) and whether the data collected could be used to potentially identify an individual, or an identity can be inferred from the audio captured.

In the past we have asked researchers to remove, or edit out non-consenting bystanders from the data, or to incorporate strict privacy and confidentiality measures.

Also worth considering is California makes it a crime to record or eavesdrop on any confidential communication, including a private conversation or telephone call, without the consent of all parties to the conversation. See Cal. Penal Code § 632. The statute applies to "confidential communications" -- i.e., conversations in which one of the parties has an objectively reasonable expectation that no one is listening in or overhearing the conversation. If you are recording someone without their knowledge in a public or semi-public place like a street or restaurant, the person whom you're recording may or may not have "an objectively reasonable expectation that no one is listening in or overhearing the conversation," and the reasonableness of the expectation would depend on the particular factual circumstances. Therefore, you cannot necessarily assume that you are in the clear simply because you are in a public place. http://www.dmlp.org/legal-guide/california-recording-law You may want to checkl out your local state laws to ensure your research is in compliance.

As the researcher you would need to incorporate or find a way to either inform the non-participant that recording is taking place, and the subject wearing the device should have a mechanism in place that they can turn off recording device if someone objects to being recorded, especially in areas that are considered to be "private." I hope this information helps, but feel free to message me if you have any other questions.

It's not impossible, this type of research is done using many different types of devices, it really comes down to the details.
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Ethics & Risks of Accessing Adolescents' Social Media Data
social network
Kara Bagot | Posts: 3

I am submitting an IRB proposal for a new study, a component of which proposes accessing adolescents' Instagram accounts and identifying salient user content for individualized stimuli in a cue-activation fMRI task. I want to preemptivelyaddress potential risks and the ethics of this but am unable to find literature on accessing and monitoring adolescents' social media accounts, and using personal images and messages. Any advice or suggestions are greatly appreciated!
John Torous | Posts: 14

This is an interesting study. You may find guidance in this other instragram study / https://arxiv.org/ftp/arxiv/papers/1608/1608.03282.pdf. Taking a step back, it be important to also assess what subset of the population uses instagram and how representive a sample they may or may not be.
Luke Gelinas | Posts: 1

If you email me I am just finishing up a piece on ethics of using social media to recruit pediatric subjects I can send you: lgelinas@law.harvard.edu

t may touch on some of the issues you're thinking about. I assume you're not proposing to make contact with people, just use their publicly availabe data?
Kara Bagot | Posts: 3

We will be recruiting substance using adolescents for a behavioral & neuroimaging study through traditional means (schools and outpatient treatment centers). Eligibility criteria includes having and using social media. They will have to consent to allow the research account 'follow' them for 2 weeks to identify content that we will use as stimuli in a fMRI cue-reactivity task. Each particpant will have individualized stimuli for the task based on images he/she posted that garnered a significant number of likes (relative to total number of friends/followers) or none-few likes.
We won't contact them through social media, but we do want access to their public and private posts.
Kara Bagot | Posts: 3

Thanks for the reference! I've found in my current qualitative study (goal n=80) that nearly all the adolescent marijuana users (the population we are targeting for the imaging study as well) use Instagram, and about half will post photos of drug paraphanelia (e.g. bongs, pipes, rigs). There also seems to be some suggestion in the literature that adolescents are more likley to post photos glamorizing substance use on Instagram. This is definitely a subset of the general adolescent population however, and is likely not representative of adolescents at large.
Lisa Militello | Posts: 5

Best of luck as this sounds interesting.
I have children in this age range and this came across one of my feeds; and you may already be aware of mulitple online identities, but the topic below may be also worth exploring in your research.


Source: https://mic.com/articles/175936/the-secret-instagram-accounts-teens-use-to-share-their-realest-most-intimate-moments#.vgyiR2Zow
"If you ask anyone under the age of 21 where they post most frequently on Instagram, chances are they'll tell you it's to their finsta. Finsta stands for "fake instagram." It's a separate, locked account with a nonsensical name that teens use to share everything from bad selfies, emotional rants, funny memes, screenshots of texts, homework help and more to a small, select group of friends.
Unlike a teen's "real instagram" or "rinsta," where their image is carefully curated for public consumption, finsta is intimate and messy and, according to every teen we spoke to, way more authentic than their main profile."
Rubi Linares-Orozco | Posts: 31

Resource for California Human Research Studies- "Understanding Confidentiality and Minor Consent in California"
The resource is more applicable to adolescent medical information, however it covers CA law and confidentiality practices when working with adolescent youth that may be applicable to Adolescent data research studies.
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