Recruitment, Intervention Design, and Ethical Concerns #SBM2017 - - PowerPoint PPT Presentation

Course #11

Using Social Media for Research: Recruitment, Intervention Design, and Ethical Concerns

CHAIRS EXPERTS

Sarah Lillie, Ph.D. Health Decision-Making SIG @sbmdecisions Minneapolis VA Health Care System Lisa Carter-Harris, Ph.D. @drCarterHarris Indiana University Sherry Pagoto, Ph.D. @DrSherryPagoto University of Massachusetts Medical School Danielle Arigo, Ph.D. Behavioral Informatics & Technology SIG @daniarigo The University of Scranton Syracuse VA Medical Center Camille Nebeker, Ed.D. @cnebeker University of California, San Diego

#SBM2017 #TechSIG

Today’s Agenda

• Welcome and introductions
• Hands-on examples of recruitment & intervention with social media
• Break
• Hands-on examples of ethics issues in this area
• Brief commentary
• Panel discussion & questions

#SBM2017 #TechSIG

Leveraging Social Media for Research Recruitment

Lisa Carter-Harris, PhD, APRN, ANP-C

@drCarterHarris

Assistant Professor, Indiana University School of Nursing (Indianapolis) Associate Investigator, Social Network Health Research Lab, IUSON Associate Member, Cancer Prevention & Control, IU Simon Cancer Center Affiliate Investigator, Kaiser Permanente Washington (Seattle)

Nothing to disclose…

…i.e., I do not work for any of the social media platforms I will talk about…

T

• day’s Goals

 Discuss social media in general as a

recruitment tool for research purposes.

 Describe the process of Facebook targeted

advertisement for research recruitment and provide an exemplar.

 Describe targeting and offer tips and pearls

for real-world use of this approach.

Twitter: @drCarterHarris

What is social media?

 An interactive platform for electronic

communications, used by groups of people to create, share, and exchange information.

 This ability to identify, connect, and

potentially align individuals can significantly amplify messages communicated via this platform.

Pew Research, 2016

How many people?

= 1.59 billion users = 400 million users = 320 million users = 161 million users = 100 million users

Pew Research, 2016; Business Insider, 2016

Why ?

Platform Mechanisms to Recruit Advantages Disadvantages Twitter Recruitment Tweet  Retweets

• Tag People & Organizations

who would find your research relevant or interesting who have larger follower bases than you

• Add a relevant hashtag (i.e.,

#LCSM)

• Consider building an online

community (i.e., The Clare Project)

• Able to loosely

target people in a particular field or interest area

• Ability to ‘pay’ to

’promote’ the tweet (gets in the feeds of users who don’t follow you)

• Sampling bias
• Not right for all

research projects

• Very little control
• ver the message
• nce out there in

the Twitter universe

• People who

do not fit your criteria will see the message Facebook Facebook targeted advertisement

• Largest social

media platform

• Sampling bias
• Not right for all

research projects Instagram Ads (owned by Facebook so ads are linked on both platforms)

• Ability to reach a

younger age demographic

• Sampling bias
• Not right for all

research projects

Types of Studies

 Survey  Focus Groups  Individual Qualitative Interviews  Intervention

Facebook

Common T erminology

 A homepage is the main webpage that an individual sees each time they log into

their personal Facebook account.

 A newsfeed is a list of stories that are constantly updating and displays in the

middle of the Facebook users’ homepage (i.e., status updates of FB friends, photos, videos, links, application activity, pages and groups followed by the user, etc…)

What is Facebook targeted advertisement?

 Facebook has the ability to ’target’ the ad

• by key variables in a FB users profile
• by things they have ‘liked’ on FB
• by groups to which they belong

 Allows the researcher to set ‘targeting’

variables about FB users the researcher would like to see their ad

Twitter: @drCarterHarris

Examples of Targeting in Facebook

 Location (both inclusion & exclusion)

• Everyone in this location
• People who live in this location
• People recently in this location
• People traveling in this location

 Ad can further be narrowed to target by country, state or province, city, and/or zip code  Zip code can be key to reaching disparate populations

15

Twitter: @drCarterHarris

Other ways or variables on which to ‘target’…

relationship status education level ethnic affinity work industry financial income home

• wnership

home type household composition parents political affiliation key life events

• rganizational

affiliation

Common T erminology r/t FBTA

 Impression – a “view” – represents the first time

the ad is served to someone in either their desktop newsfeed, mobile newsfeed, or as a right hand column ad.

 Click to website – refers to a unique FB user

clicking the web link embedded in the FB ad that is redirected to the website linked to the advertisement.

 Audience network – a collection of mobile

applications that FB partners with to offer the advertiser (i.e., researcher) the ability to extend the reach of their ad into multiple mobile applications

• utside of, but connected to, FB.

Twitter: @drCarterHarris

Recruitment: An exemplar

 Cross-sectional

descriptive design using survey methodology

 Target N = 300  Inclusion Criteria:

• Age 55-80 years
• Current or Former

Smoker (if former, quit within past 15 years)

• 30 pack-year smoking

history

• Lives in State of Indiana

 Recruitment methods:

• FB targeted

advertisement

• Advertisement in high-

volume readership and minority newspapers

• In-person recruitment

 Indiana Black Expo  Indianapolis Senior Housing Centers

Understanding Lung Cancer Screening Behavior: Racial/Ethnic, Gender and Geographic Differences in Long-term Smokers

Twitter: @drCarterHarris

From a recruitment perspective, FBTA was wildly successful…

 Target N = 300  Surpassed 300 enrolled participants with

completed surveys in 8 days

 Final N = 465 (14 day total campaign)

Twitter: @drCarterHarris

Examples Specific to Different T

• pics

Research T

• pic or Population

Caregivers of diabetic patients Native Americans E-cigarette users Epilepsy Individuals living in rural areas Individuals recently traveling abroad Nursing students Ideas to Target by Likes American Diabetes Association Specific geographic locations (including zip codes) Specific brand names (i.e., Blu) Epilepsy Foundation Zip code (using census data to identify rural areas) Location (using setting ‘people recently in this location’) National Student Nurses Association Twitter: @drCarterHarris

Let’s Create…

Twitter: @drCarterHarris

Thank you…

Twitter: @drCarterHarris

Adapting behavioral interventions for social media

Sherry Pagoto, PhD Professor Founder, UMass Center for mHealth and Social Media University of Massachusetts Medical School Department of Medicine @DrSherryPagoto

Before you start…

◎ Use target platform to point of complete comfort with features

Start a Facebook page/Twitter feed for your lab

◎Join a group on the target platform ◎Get training in the platform from your librarian, public affairs office ◎Check out the Mayo Clinic social media webinars

So you want to do a social media delivered intervention…

Why are you using social media?

◎ Primary modality? ◎ Dual modality along with another modality (visits, text, phone, etc)? ◎ Adjunctive/secondary (primary modality is something else)?

Pagoto et al (2016) Adapting behavioral interventions for social media delivery, JMIR.

What is purpose of the social media piece?

Deliver behavioral counseling instead of clinic visits? Provide supplemental information? Maximize attendance and retention in the intervention? Provide a place for study participants to communicate, connect, and support each other? Any combination of the above?

What type of social media feed?

Host generates content Intervention feed, participants are not expected to post (public health org) Host and participants generate content Intervention feed and participants encouraged to post and interact (guided patient community) Participants generate content No feed, just a place for participants to interact (unguided patient community)

Which platform?

Commercial vs investigator-developed? Which platform does target population use the most? Which platform has functions that I need to do this intervention? Which platform is acceptable for this purpose to the participants?

Facebook “secret” group

◎ Invitation only ◎ Only members can view group and its content ◎ Discussion strings, post links, images, videos, live videos, polls, documents ◎ Can create events ◎ Facilitate a group chat ◎ “Share” function is off ◎ All posts appear in all group members newsfeeds

Facebook page

◎ Group and content is visible to public ◎ Entry can be via moderator approval ◎Discussion strings, post links, images, videos, live videos, polls ◎Share function on all posts ◎Can create events ◎Posts appear in member’s newsfeeds based on their activity on the page (less activity=fewer posts) ◎ Contamination risk

Twitter

◎ Using privacy settings you can create a private group. ◎ Discussion strings, group chats, post links, pics, videos, gifs (no retweets on private) ◎ 140 character limit to tweets! ◎ Twitter can give you archive of your feed

Target population?

Do they use social media? Consider inclusion/exclusion criteria regarding social media habits Experience with the platform? If not, plan to train to proficiency.

What is your intervention content?

An evidence-based intervention in traditional format (e.g., print manual)? Yet to be developed?

Content Conversion

Each platform has ever changing norms (character limits, language, conversation style, speed of responses, use of video/images, length of videos) Traditional materials need to be converted to posts

• r online articles you can link to.

Videos? Images?

Adapting content

Break content down into smallest meaningful pieces Capture all lesson objectives Use images Leverage existing content that’s relevant Link to a blog where you house a library of articles Invite conversation

Content Library

◎This is your intervention manual ◎Should always be “current”

○Don’t rely on outdated content ○Anything more than a month old = ICYMI ○Anything more than a year old feels outdated on social media

◎Do plenty of developmental work to refine posts

Group Size

◎How big should an online group be??? Size of an intervention group or the size

• f an online community?

◎Online communities are typically not static

○They grow over time, new members constantly joining ○People can usually invite their friends

The Facebook+Friends Weight Loss Study

Pilot feasibility study of a 16-week Facebook- delivered weight loss intervention (n=80) in which participants in one condition can invite friends and family who are also trying to lose weight. We will explore how many people get invited, whether inviting close ties =better weight loss, and greater engagement

K24 HL124366

Engagement plan

◎ Frequency of posts ◎ Group moderator

○ How often will they log in? ○ What is their charge?

◎ Engagement-inducing posts

Post types used in our Facebook weight loss study

• 1. Soliciting Thoughts/Feelings

“Don’t forget to weigh in tomorrow morning! How are you feeling about the first weigh in?”

• 2. Soliciting Progress Report

“The most effective weight loss strategy is diet tracking. How is it going so far with My Fitness Pal?? Check out this article on why diet tracking is so darn important: link”

• 3. Soliciting Goals/Plans/Commitment

“Today’s challenge: Eliminate ONE food item from your home (and grocery list) that you habitually overeat. Which food will get the boot?”

• 4. Soliciting Barriers/Problems

“Weekends are the toughest for staying on calorie goal! What do you think will be your biggest challenge this weekend?”

• 5. Weigh in

“Happy Friday! What was your weight change for the week?”

• 6. Information

“Got 10 minutes? Try this 10 minute TOTAL BODY strength training for beginners video.”

• 7. Other

Engagement by Format (n=56 participants)

Likes/post Comments/post Total/post Soliciting Thoughts/Feelings (17%) 2.2 (1.5) 5.6 (4.6)* 7.8 (5.0)‡ Soliciting Progress Report (2%) 3.5 (3.0) 11.2 (5.3)* 14.7 (6.4) ‡ Soliciting Goals (15%) 3.0 (2.6) 5.9 (5.5)* 8.8 (7.2) ‡ Soliciting Barriers (10%) 1.7 (1.6)† 8.2 (5.4)* 9.9 (6.1) ‡ Weigh in (7%) 2.7 (1.7) 16.6 (7.3)* 19.3 (7.9) ‡ Information (46%) 2.8 (2.2) 2.5 (2.8) 5.3 (4.0) Other (2%) 4.0 (2.4) .8 (1.2) 4.8 (3.5) †p<.05 pairwise comparison with Information *p<.001 pairwise comparison with Information ‡ p<.01 pairwise comparison with Information

Engagement plan

Ice breakers Group chats Open ended questions Campaigns/challenges “Microcounseling” Weekly progress reports

Do’s

◎Preview posts to catch mistakes or poor quality not previously noticed ◎Use software to schedule posts (e.g., Buffer) to come out at regular times ◎Have a plan for engagement data to be pulled from the platform (a programmer can help with this)

Do’s

◎Focus groups, cognitive interviews to refine posts in advance ◎Seek consultation from social media marketing professionals ◎Follow social media marketing news to stay

• n top of changing norms (Social Media Today

is a great Facebook page)

Don’t…

◎Don’t post documents that could be converted to posts since they will get fewer click thrus ◎Don’t heavily rely on links because most people will not click through ◎Don’t use long posts ◎Don’t use tiny fonts ◎Don’t use poor quality images ◎Don’t assume every participant will view and read every post

Training

◎ Moderator

○ Must be very comfortable with platform and its features

◎ Participants

○ Orientation sessions can be helpful

Intervention reporting

Intervention Type Type (host-, user- or host- and user- generated) Is the social network content intended to be host-generated, user-generated, or host- and user-generated? Primary modality Is the social network the primary intervention modality or adjunctive? Purpose of SNS What is the purpose of the social network? Participants Experience with social media What is the social media experience level of participants? Current users? Non-users? Intervention Content Post frequency How often will posts be made by the interventionists? Content What is the content of the posts? Microcounseling Will interventionists be providing counseling? Automation Will posts be automated? If so, how many? Chats Will moderated chats be held? If so, how often? View termination How many participants stopped viewing posts before the end

• f the intervention and at what point in the intervention?

Drop out How many participants did not attend follow-up visits?

Engagement metrics Likes/favorites How many likes did each post get? On average, what percent

• f posts did each participant like?

Replies/comments How many replies did each post get? On average, what percent of posts did each participant reply to? Original posts How many original posts did participants make? On average, how many original posts did each participant make? Intervention fidelity Page membership What percent of participants actually joined the group/page/community? Views How many views did each post get? On average, what percent

• f posts did each participant view?

Moderator login frequency How often did moderators/counselors log in? Moderator engagement frequency What percent of participant posts received no moderator engagement (e.g., likes, replies/comments)? Retention Group membership termination How many participants exited the group before the intervention ended?

Other Measures

Participant acceptability

○Barriers, facilitators ○Lurking? ○Likes/dislikes for each type of post and group as a whole

Focus groups are a must Sense of belonging, social cohesion, social support for target behavior

Thanks!

Any questions?

For help with your project, contact me at: Sherry.pagoto@umassmed.edu You can learn more by following: @DrSherryPagoto @UMassmHealth https://www.facebook.com/UMASSmhealth/

Ethical Considerations with Social Media Facilitated Research

Camille Nebeker, EdD , MS UC San Diego Scripps Translational Science Institute @cnebeker

Society of Behavioral Medicine Annual Meeting, San Diego March 30, 2017

CAPRI

Collaborative to Advance Professional and Research Integrity Disclosure

The Connected and Open Research Ethics (CORE) initiative is building a national resource to support the ethical design and responsible review of research studies that utilize emerging

• technologies. The CORE is supported

by a grant from the Robert Wood Johnson Foundation and the UC San Diego Chancellor’s Interdisciplinary Collaboratory Fellowship Award. @UCSDtheCORE | thecore.ucsd.edu The Building Research Integrity & Capacity (BRIC) programs promote research integrity by educating “research” Community Health Workers (CHWs)/Promotores de Salud about the scientific method and human research ethics. The BRIC programs have received support from the NIH, ORI and UC San Diego. @UCSD_BRIC | bric.ucsd.edu

MISST

Mobile Imaging Pervasive Sensing Location Tracking Social Media

Social Media Defined

Any online and mobile resource that provides a forum for generating, sharing, or discussing ideas and content (Gelinas et al., 2016)

• Online Communities
• Social Networking
• Professional Networking
• Content development
• Location based services

Social Media Scope

• How are social media research methods different?
• What laws or regulations apply?
• How do IRBs apply the regs and ethical principles?
• What is your responsibility when designing,

conducting and reporting research using SM methods?

• What resources are available and how you can

contribute?

Twitter - Global Health

Twitter - Local HIV

The Facebook Study

Ethical and Regulatory Challenges

• Informed Consent: How can we make consent more

informed – within the social domain?

• Risks and Benefits: How should the probability and

magnitude of harm or benefits be determined?

• By-Catch: What about the rights of people who are not

research participants (e.g., friends of friends)?

• Data Management: What are best practices for storing

and sharing health data when “public” AND not protected by HIPAA?

Social Media “Research” Methods – What’s different?

Researcher should know if conducting research with human subjects.. Exempt? Expedite? Full Board?

Subject to the same regs and norms Operational implications may differ IRBs may not be sufficiently familiar

Tips for Researchers

https://catalyst.harvard.edu/pdf/regulatory/Social_Media_Guidance.pdf

Ethical recruitment strategies Check TaCoS and Privacy Check state and local laws Describe consent and communication

Tips for IRBs

https://catalyst.harvard.edu/pdf/regulatory/Social_Media_Guidance.pdf

Develop analogies Familiarity with state/fed laws Check compliance w/TaCoS Apply Belmont principles

Should New Methods and Tools Demand New Solutions?

Imagine a Human Research Protection System Responsive to 21st Century Science

Bloss C, Nebeker C, Bietz M, Bae D, Bigby B, Devereaux M, Fowler J, Waldo A, Weibel N, Patrick K, Klemmer S, & Melichar L. Re-Imagining Human Research Protections for 21st Century Science. J Med Internet Res. 2016; 18(12):e329. doi: 10.2196/jmir.6634.

The CORE Platform

Stakeholders in the MISST ecosystem have access to…

Q&A Forum

Network members post questions & share expertise

Resource Library

Collect and curate best practices including IRB approved research protocols and informed consent language

Network

Connect stakeholders including researchers, privacy experts, technologists, ethicists, regulators & participants

Demo

THANK YOU! QUESTIONS? CONTACT: nebeker@eng.ucsd.edu @cnebeker