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Study Details and Procedures
April 12, 2017
This project is supported by Grant # 2014-50223-NC-JU awarded by the Office of Juvenile Justice and Delinquency Prevention, Office of Justice Programs, U.S. Department of Justice. The opinions, findings, and conclusions or recommendations expressed in thispresentation are those of the authors and do not necessarily reflect those of the Department of Justice.
The Big Futures Project (BFP)
IntroductionsiRT Team
Karen Burns
Rebecca Stelter
Katy Malley
Janis Kupersmidt
iRT is a behavioral sciences research company in Durham, NC, that conducts translational scientific studies; training, technical assistance, and evaluation projects; and develops and disseminates evidence-based products and services designed to improve the health and well-being of youth, families, organizations, and communities.
• BPF Overview
• Confidentiality and Privacy
• Screening, Enrollment, & Consenting
• Mentoring Central Data Collection System
• Next Steps
Agenda
What is this project?Description: This is an OJJDP-funded follow-up study addressing the long-term effects of mentoring on at-risk youth. Here, “at-risk” is defined as youth who were characterized by one or more of the following factors:
-child of an incarcerated parent; -single parent household; -living in a high crime neighborhood; -juvenile justice involved; -youth in aftercare.
We will also assess participants’ outcomes after engaging in the Big Futures Program.
We will look for differences between Big Futures participants and those who only participated in the traditional BBBSEMO program.
Goal: We hope to provide information about the long-term effects of mentoring on youth as well as the effects of the Big Futures Program on youth’s long-term outcomes.
Types of Data Collected
Survey Data is entered into iRT’sonline data collection system, but may also be collected over the phone or using paper/pencil.
Archival Data will come from AIM
TimelineDecember/Early January
◦ Staff Training
◦ Collecting Potential Participants from AIM
February-May◦ Consent 200 participants (100 former littles, 100 Big Futures littles)
◦ Collect Baseline surveys for 200 participants
August-September◦ Collect Follow-up surveys for 200 participants
September (grant ends Sept 30th)◦ Data analyses and dissemination of findings
iRT’s Role in the Project
-Design the research project
-Collect, organize, and clean data
-Conduct statistical analyses
-Write reports describing the results of the evaluation:◦ For OJJDP
◦ For the scientific literature
Your Role in the Project
Complete Human Subjects Research training
Webinars with iRT
Participant recruitment, screening, consenting
Data collection
Maintain contact with iRT for support
Collect and submit archival data from AIM to iRT
Participant Eligibility1) Mentee was characterized by one or more of the following factors while a mentee at BBBSEMO:
-child of an incarcerated parent;
-single parent household;
-living in a high crime neighborhood;
-juvenile justice involved;
-youth in aftercare.
2) Must be over the age of 18
3) Both Big Futures and non-Big Futures participants
10 Contact attempts made by BBBSEMO
staff
Participant wants to hear more about
the studyUse script to
assess continued
interest
OR
Send participant a recruitment
letter via email
Staff uses script to consent via phone
and
Participant completes survey using phone, paper,
or online method
Participant uses online consent form
and
Completes survey using phone, paper, or online
method
Participant not interested
Participant is unable to be reached
• BPF Overview
• Confidentiality and Privacy
• Screening, Enrollment, & Consenting
• Mentoring Central Data Collection System
• Next Steps
Agenda
Potential Benefits of Data Collection
-Former program participants are allowed to reflect on their experiences in BBBS and Big Futures, and how it may or may not have influenced their life as a young adult.
-Former mentees may gain skills and a sense of agency by expressing their opinions and sharing about themselves.
-The unique perspective of each participant helps us to learn more about how to offer more effective services in the future.
Potential Challenges
-Participants may be reluctant to provide information
-It may be difficult for participants to prioritize participation over other demands (e.g., work, family, school)
-Potential distress for participant who is reporting sensitive information
-Risk of learning something about the family that must be reported
Federal Confidentiality Regulations
What is Confidentiality?
Maintaining confidentiality of information collected from research participants means that only the investigator(s) or individuals of the research team can identify the responses of individual subjects; however, the researchers must make every effort to prevent anyone outside of the project from connecting individual subjects with their responses.
Violation of Confidentiality Statute: Disclosure
◦ Releasing any research data identifiable to any specific person.
◦ Does not apply to future information
◦ Does not apply to non-study information about individuals
Examples of Disclosure
Staff sharing survey information/data from a specific match/mentor/mentee with other staff, family, government agencies (grant applications), the public, etc.
Staff discussing a match in a way that identifies them as participants.
Participant data stored where others can access it.
Not Disclosure A mentor/mentee sharing personal, study information about him/herself.
Newsletter article about a match that was in the study, but does not include any information about/from the study.
Newsletter article about the study outcomes (where there are no individual identities or identifiers).
Future information, not collected via the study, about a match that was in the study.
Violation of Confidentiality Statute:Deductive Disclosure
Deductive disclosure is the identification of an individual's identity using known characteristics of that individual. Even though direct identifiers (e.g. name, addresses) are removed from survey data, it may be possible to identify respondents with unique characteristics. An individual who is known to have participated in a study may be identified from various personal characteristics. (Source: ICPSR)
Examples of Deductive Disclosure
Newsletter article/grant application about baseline/outcome data that also includes identifiable participants in the study (without explicit, additional consent).
Newsletter article/grant application about baseline/outcome data that includes small numbers of individuals with a particular demographic feature (e.g. race) that could be connected back to an individual.
Ways to Avoid Accidental Disclosure
-Don’t discuss individual participation in the study, ever.
-Don’t share data from individual surveys.
-Stick to sharing the information provided in research reports.
-Ask if you aren’t sure.
Wear Your “Research Hat”
Monitor conversations
Secure records
Control access to records
Protect participant information
Ensure adherence to ethical requirements
Inform iRT immediately if you suspect disclosure has taken place!
Wear Your “Research Hat”
Read all scripts and survey questions as written.
Maintain a polite, empathetic, but neutral reaction to what participants tell you and to their answers.
Assure the participants that their answers do not impact their standing/participation in the program.
Inform participants that their answers to questions in this study do not influence BBBSEMO in terms of service provision.
Wear Your “Research Hat”
Adhere to confidentiality guidelines as stated in the consent form.
Build and maintain trust with participants throughout the evaluation process.
Report any type of adverse reaction or questions from the participant that you can not answer to Rebecca and Karen ASAP.
Human Subjects Research TrainingAs a Data Collector you may have access to some sensitive data (e.g., identifying information, selected survey results, etc.).
Therefore, you must complete Human Subjects Research Training available from the NIH.
This training will help you learn how to treat this data in order to protect yourselves and the participants involved.
Results of the training must be submitted to iRT before a staff member can be involved in any type of research activities for this project.
• BPF Overview
• Confidentiality and Privacy
• Screening, Enrollment, & Consenting
• Mentoring Central Data Collection System
• Next Steps
Agenda
10 Contact attempts made by BBBSEMO
staff
Participant wants to hear more about
the studyUse script to
assess continued
interest
OR
Send participant a recruitment
letter via email
Staff uses script to consent via phone
and
Participant completes survey using phone, paper,
or online method
Participant uses online consent form
and
Completes survey using phone, paper, or online
method
Participant not interested
Participant is unable to be reached
Recruitment Procedures: IntakeWhat is an intake?◦ The process in which we inform potential participants
of the study and lead them into the consenting process
Who is being recruited?◦ Former BBBSEMO Mentees and current Big Futures
participants
ScreeningPotential participants have been pulled from AIM and uploaded into our data collection system.
Double check that they are appropriate for this study by verifying:◦ their identity (in case contact info is incorrect)
◦ their age
◦ That they were considered “at-risk” at the time they participated in BBBSEMO
Confirm Contact InfoTools available to you include: AIM
Spokeo
Property tax records (for mailing information)
Social media
Google Voice
AIM◦Access to old addresses, emails, phone numbers last recorded in AIM
◦ You can start with what has already been entered into the iRT data collection system
◦Access family members or other personal contacts (excluding their mentor) that were included in their last recorded AIM entry.
Contacting Family
“Hello, my name is _____ and I am calling for (insert mentee’s name).
He/she was a mentee in the BBBSEMO program and we would like to talk to them about their experience as a mentee.
Do you know where I could reach them?”
Spokeo.com◦ When all AIM contacts lead to dead ends, Spokeo is a resource
that can be used by the team to help try to find individuals.
◦ There are limitations to this service
◦ A few general rules:
◦ Use of this tool is only limited to use for this specific research project (no personal use or use for any other study or for other BBBSEMO matters).
◦ We only have access to basic Spokeo functions
Spokeo.com◦ Put in the First and Last
Name of the person of interest. As you’ll see here, if you have looked up their information before, it will remember that in a generated list (me)
◦ You can also look up by phone or mailing address or “social” which is by email address.
◦ Click search
The profile results provide the following types of information:
Name, Age, Birthdate, Address, Map.
Ability to be notified if the profile is updated
Contact information
Location History
Social Profiles
Relatives
Personal Details
Court Records
Historical Records
Spokeo: Some other limitationsKaty’s profile:
• Outdated phone number• Correct address• Incorrect relatives
Karen’s profile: • Outdated phone number• Correct address• Correct relatives at previous addresses
• Use AIM for additional data • Use the County’s property tax website to verify or find
addresses
https://revenue.stlouisco.com/collection/ppinfo/
https://revenue.stlouisco.com/collection/ppinfo/
Social Media
• Spokeo has some links to these accounts• Can search Facebook, Twitter, LinkedIn,
Google search to search for contact information
Use Google Voice•Text from your computer: Send text messages to up to five contacts at a time, straight from your computer's browser.
•Read transcriptions of your voicemails, add notes, download, and share voicemails.
•Screen calls and create personalized greetings
•Pick up calls from any phone: Choose to receive calls at home, work, or on your mobile phone, based on who is calling or when.
•Make international and conference calls, block unwanted callers, and listen in on voicemails.
Make a call from the computer• Log in to voice.google.com with your Google account.
• On the left hand side of the screen there are red “Call” and “Text” buttons.
• Once you click “Call” or “Text” a pop-up box will appear.
Make a call from the app
• Download the app
• Add the phone to your account
Make a call from the appCheck Voicemails Make a Call or Send a Text
Confirming Contact Info:
Remember to update the Data Collection System with any new and accurate information that you collect.
10 Contact attempts made by BBBSEMO
staff
Participant wants to hear more about
the studyUse script to
assess continued
interest
OR
Send participant a recruitment
letter via email
Staff uses script to consent via phone
and
Participant completes survey using phone, paper,
or online method
Participant uses online consent form
and
Completes survey using phone, paper, or online
method
Participant not interested
Participant is unable to be reached
Recruitment Methods:
Postal service
Social media
Phone
In-person
Recruitment Always follow the script!
As you become more and more familiar with the script, it will feel more natural. Practice, Practice!
It’s ok to answer questions, define words, or give information for clarity.
Let them know that, if they would like to hear more, some of that information will be in the consent discussion.
Don’t express disappointment if they tell you no, also anticipate some negative reactions and don’t take it personally
Consent Methods:
Online
On paper (in-person)
By phone
Same rules as recruitment… Always follow the script.
Practice reading the script and talking about the project.
It’s ok to answer questions, define words, or give information for clarity.
Don’t express disappointment if they tell you no, also anticipate some negative reactions and don’t take it personally.
The consenting process is for those who are interested in learning more about the study and would like to read the consent form.
Not every person who reads the consent form will agree to participate in the study.
• BPF Overview
• Confidentiality and Privacy
• Screening, Enrollment, & Consenting
• Mentoring Central Data Collection System
• Next Steps
Agenda
10 Contact attempts made by BBBSEMO
staff
Participant wants to hear more about
the studyUse script to
assess continued
interest
OR
Send participant a recruitment
letter via email
Staff uses script to consent via phone
and
Participant completes survey using phone, paper,
or online method
Participant uses online consent form
and
Completes survey using phone, paper, or online
method
Participant not interested
Participant is unable to be reached
MentoringCentral.net
Accessing the DCS1) CLICK “MANAGE
STUDIES”2) CHOOSE “BIG FUTURES”
3) CLICK ON THE STUDY’S URL
Dashboard
Dashboard
Dashboard
Dashboard
Participant Page:
Updating Information
Logging Contacts
Logging Contacts
Logging Contacts
Monitoring contacts
Consenting
Consenting: Via Email
Consenting: Via Phone
Consented Participants: Monitoring and Survey Deployment
Survey Deployment: Dashboard
Select Survey and Choose Deployment Method
Surveys via Email
• Check that the email address and names are correct
• Customize the Subject and Email text as you would like without changing the survey link.
Phone surveys
• Put in the participant’s name and then, in parentheses, “Taken by YOUR Name”
• For example, you could say “Katy Malley (Interviewed by Rebecca Stelter)”
• Answer all remaining questions exactly as the participant has recorded them.
Reading Survey Questions
Say:
Please answer the following questions about your
career goals on a scale from 1-strongly disagree to
5-strongly agree. The first item is, “I have
participated in training or schooling that will help
me reach my career goal”. Do you 1- Strongly
disagree, 2- Disagree, 3 - Neutral, 4- Agree, or 5 –
Strongly Agree? (Wait for the participant to
respond).
“I have a specific plan for achieving my career
goals.” How much do you agree with this statement
on a scale from 1- strongly disagree to 5 – strongly
agree. (Wait for the participant to respond)
“I have sought job assignments that will help me
obtain my career goals.” (Wait for the participant to
respond.)
Next Steps1. Human Subjects Training for all BFP staff
2. Set-up Google Voice◦ Access on your computer: voice.google.com
◦ Download the app for your phone: Android or iOS
◦ Link to your phone number- work or mobile
◦ Update voicemail message, if needed
3. Complete survey
4. Practice consenting
QUESTIONS?
