Use Digital Media to Recruit Study Participants

How to use Digital and Social
Media to Recruit Study
Participants Online
Katja Reuter, PhD
Director of Digital Innovation and Communication, Southern California Clinical and
Translational Science Institute (SC CTSI), University of Southern California (USC)
Assistant Professor of Clinical Preventive Medicine, Institute for Health Promotion and Disease
Prevention Research, Department of Preventive Medicine, Keck School of Medicine of USC

Presenter Disclosure Information
Katja Reuter, PhD
Southern California Clinical and Translational Science Institute
University of Southern California
Financial Disclosure
No relevant financial relationships exist.

About the Digital Scholar
Training Initiative

Topics
1. Understand what populations can be recruited online
2. Describe successful recruitment strategies on Twitter, Facebook,
and Google
3. Understand components of a digital participant recruitment
strategy
4. Evaluate digital recruitment messages
5. Understand regulations, guidelines and ethics relevant to digital
participant recruitment

Recommended reading
Checklist
Template language

Social Media Touch Points
Engagement,
Education, and
Recruitment
Retention
Dissemination of
Study Results

Seven-in-Ten Americans Use Social Media
http://www.pewinternet.org/fact-sheet/social-media/

Social Media User Base
Age Race
Gender Education
Pew Research Center. Surveys conducted 2005-2018.
Income Community

Platform Popularity

Misconceptions
People don’t want to read about clinical research online.
Actually: The use of the Internet as a top source for clinical
research information has increased significantly (46% in 2013).
[Ref. Report on clinical trial information seekers. Perceptions and insights study. The Center for Information &
Study on Clinical Research Participation; 2013.; Harris-Interactive, 2004.]
Nearly 60% Americans say they sought health information online
in the past year. [Ref. Pew Research, 2013]
More than 40% of the public reports that they have used social
media to learn about clinical research. [Ref. Harris-Interactive, 2004]

The Digital Patient
Ref. Pew Internet Research. Social Media Usage: 2005-2015. Pew Research Center, October 2015.;
http://www.cdwcommunit.com/perspectives/expert-perspectives/todays-digital-patient/

Leverage the Spoke-Hub Model
Your Study Web Page is the Hub

Your Study Web Page is the Hub
Leverage the Spoke-Hub Model
H U B
Your Study
Web Page
v
Online
Search

Example of Hub: Clinical Trial Web Page
Ref. http://clinicaltrials.keckmedicine.org

Effectiveness of social media for
study participant recruitment

Social Media Effectiveness
R E A D I N G

Use of Google Adwords for
study participant recruitment

Stroke Study
P R E - R E A D I N G

Anthony Kim, MD
Assistant Professor of Neurology
and is Medical Director of the
UCSF Stroke Center
“We were surprised to see that tens of
thousands of people were regularly
‘asking’ a search engine about stroke-
related symptoms in many cases
shortly after the onset of symptoms.
In fact, every month, about 100 people
were finding our study website by
entering the query: “Am I having a
stroke?” directly into their Google
search box.”
Perspective
http://digitalmediaandscience.wordpress.com/2012/10/31/am-i-having-a-stroke-connecting-with-patients-in-
new-ways-as-they-search-for-health-information-online/

Recruiting Patients Online
http://digitalmediaandscience.wordpress.com/2012/10/31/am-i-having-a-stroke-connecting-with-patients-in-new-ways-as-they-search-
for-health-information-online/

Social Media Listening/Monitoring
 Listen to ongoing conversations about the study disease or related
aspects to learn…
First listen, …
Who talks about the disease area?
What do they say?
Who are the influencers in the disease community?
Consider the voices of patients, physicians, disease
advocates, disease foundations, researchers, medical
centers

Tool Example: The Disease Hashtag Project
Ref. http://www.symplur.com/healthcare-hashtags/diseases/

Example: #RheumatoidArthritis
Ref. https://www.symplur.com/healthcare-hashtags/rheumatoidarthritis/

Defining: Hashtags
A hashtag is a word or phrase preceded by a hash or
pound sign (#) and used to identify messages on a
specific topic – developed on Twitter and now used on
other platforms such as Instagram and Facebook.

Tool Example: Social Mention
Ref. http://www.socialmention.com/

User Conversations Across Platforms

Contributing on Social Media
 Share links: Photos, videos, infographics, tips, novel information,
interesting facts, stats, quotes related to your study
 Answer questions and provide value, e.g., share resources -- re-use
existing content if possible (guide to managing post-surgery pain or
infographic on new treatment option)
 Share random thoughts, e.g., Without clinical studies, medical
treatment would always remain the same. Thanks to all of those who
participate.
 Promote, encourage, and support others
 Target specific populations to increase your relevance

Share More than Your Research Publications
Research Data & Negative Results
Research Articles (Manuscripts)
Presentations
Images, Video, Podcasts
Perspective/Thought leadership
Software Code

Use Media such as Images and Video
Ref. 7

Asking Social Media Users for Help
 Ask for help or to do something, e.g.,
Then ask, …
complete a survey,
contact the study team,
visit a web page,
share feedback on proposed study design,
spread the word,
participate in a clinical study,
…

Promoting Clinical Research Digitally
Digital platform Organic Advertising
Twitter Yes No
Facebook Yes Yes (Approval required)
Youtube Yes Yes (Approval required)
Pinterest Yes No
Instagram Yes Yes (Approval required)
Google Search Yes Yes (Approval required)
Wordpress Yes Yes (Approval required)
Tumblr Yes Yes (Approval required)
Limited overview
Based on platform posting guidelines, Aug 2017

Targeting
https://blog.adstage.io/2013/08/23/how-to-target-facebook-ads-to-your-audience/

Topics
1. Understand what populations can be recruited online
2. Describe successful recruitment strategies on Twitter, Facebook,
and Google
3. Understand components of a digital participant recruitment
strategy
4. Design and evaluate digital recruitment messages
5. Understand regulations, guidelines and ethics relevant to digital
participant recruitment

Digital Information about
Clinical Studies: Checklist
 The creator of digital/social media content is responsible for it.
 Abide by institution’s media guidelines.
 Ensure that the study sponsor is informed of your digital/social
media activity.
 Refrain from providing significant details of any clinical study –
focus on basic study information. Suggestion: Link digital media
content to study page with more information
 Beware of proprietary information.
[Ref. 13]
C H E C K L I S T

[Ref. 13]
 Avoid making claims of treatment efficacy or side effects. Use
disclaimers to reduce risk.
 Avoid disclosure of preliminary results or non-public information.
 Bloggers involved in the study should not write about trial or
drug, device, or treatment (could be viewed as advertising).
 Avoid using social media for eligibility screening, refer to
institution and study team.
Digital Information about
Clinical Studies: Checklist C H E C K L I S T

E X E R C I S E
Developing Recruitment Messaging
You want to promote a study that focuses on the drug nivolumab to see
whether it may help to prevent relapsing in patients with acute myeloid
leukemia in remission after chemotherapy. Relapse remains the main failure
of treatment in patients with acute leukemia after chemotherapy. Nivolumab
has already shown impressive immune therapy results in patients with
melanoma, kidney cancer, and non-small-cell lung cancer. You are trying to
enroll men and women 18+.
• Trial length is 2 years.
• Number of visits: 1 every 2 weeks
• Procedures: Blood counts, bone marrow exam, toxicity test
• Compensation: $150
• Medical cost coverage: Drug at no cost; standard follow-up insurance

#1
#2
#3
Would you use any of these Twitter
messages for recruitment into a clinical
trial?

Would you use any of the following Facebook
messages?

[Ref. 13]
 State new treatment, drug, device as investigational/in testing.
 Avoid coercion, the practice of persuading someone to do something
by using force or threats.
 Don’t imply favorable outcomes or post claims regarding safety,
e.g., better treatment, better chances to be cured, safe treatment.
 Don’t promise free medical treatment.
 Don’t emphasize payment for participants, e.g., participants may be
compensated for their time
Digital Recruitment Messages
FDA and IRB Guidelines Apply ges C H E C K L I S T

Tracking Key Performance Indicators
Examples:
Retweets/Repins
Shares
Replies/comments
Followers
Likes
Social media analytics
Initiation of
Contact with
Study Team
Social Media
Engagement
Link
Engagement
Study Page
Engagement
Impressions
Clicks Examples:
Sessions
Time spent on page
Pageviews
Social media
built-in analytics, e.g.,
Twitter, Facebook,
Pinterest
Social media
analytics; Buffer;
Hootsuite; Tweetdeck;
Kuku.io; Link
shortening services,
e.g., Ow.ly
M E A S U R E M E N T
T O O L S
Google Analytics Google Analytics;
CTMS

Passive vs. Active Recruitment
“Distributing recruitment
materials (ads, posters, flyers)
with the aim of attracting
potential participants to contact
the research team for more
information and for
consideration of enrollment.”
PASSIVE RECRUITMENT ACTIVE RECRUITMENT
“Occurs when research staff
members approach and
interact with specific
individuals with the aim of
enrolling them in research,
usually on the basis of
knowledge of characteristics
that would make them suit-
able candidates for particular
trials.”
Gelinas et al. (2017) Using Social Media as a Research Recruitment Tool: Ethical
Issues and Recommendations, The American Journal of Bioethics, 17:3, 3-14,.

Ethical Considerations & Regulatory
Challenges
• Federal and state laws govern social media recruitment
activities
• Lack of specific regulatory guidance
• IRBs may or may not have policies on social media
recruitment
• Among existent policies there is no clear consensus
Challenge: Social media requires applying legal and ethical
norms sensitively in a context that may be unfamiliar to
investigators and IRBs.

Tools to Assess and Manage
Social Media Recruitment Application
Nonexceptionalism
methodology

Apply Nonexceptionalism Methodology
“In short, we suggest striving to normalize social media recruitment
techniques while remaining sensitive to their potentially novel aspects
by,
• first, making their resemblance to more traditional offline recruitment
explicit;
• second, applying the appropriate ethical considerations and scrutiny;
and
• third, determining whether social media recruitment differs from
offline recruitment in ways that warrant further review.”
Gelinas et al. (2017) Using Social Media as a Research Recruitment Tool: Ethical
Issues and Recommendations, The American Journal of Bioethics, 17:3, 3-14,.

Tools to Assess and Manage
Social Media Recruitment Application
Privacy-by-Design
Framework

Apply Privacy-by-Design Framework
Bender et al. Ethics and Privacy Implications of Using the Internet and Social Media to
Recruit Participants for Health Research: A Privacy-by-Design Framework for Online
Recruitment. J Med Internet Res 2017;19(4):e104

Case study 1: Exercise
“Investigator A wishes to recruit from a Facebook cancer patient
support group to increase enrollment for her clinical trial, which holds
the prospect of direct benefit for participants. The Facebook support
group is “open,” that is, there are no restrictions to joining the support
group, no registration, no requirement to post certain minimal
information, and no assumption of privacy or that all members online
are afflicted with cancer. Anyone, including the research team, can
identify and contact members of the group through it. Some members
of the IRB wonder whether contacting people in this way would be
ethically advisable, given that the group is formed around a disease
category and not specifically geared toward clinical research, and
that members of the group are likely to be vulnerable and may feel
embarrassed, stigmatized, or alienated by recruitment advances.”
Gelinas et al. (2017)

Case study 1: Solution Approach
How do you suggest evaluating respect for privacy and investigator
transparency, and the proposed social media recruitment in general?
NORMALIZING
1. More familiar offline approach of the proposed situation: e.g.,
physician-investigator in a clinical setting attending an open oncology
patient support group.

Addressing Social Media Platform Situation
A. Facebook group with moderator: Ask moderator for permission
B. Facebook group without moderator: Fewer or less stringent restrictions
may apply if groups is open and less personal and intimate where individuals
can choose not to respond (vs. at in-person support groups where the person
is physically present and may feel compelled to respond)
C. For both A and B:
• Record any negative comments or information shared from Facebook
members, tabulate that information, and report back to the IRB at
continuing review or earlier.
• Transparency: Be forthright that they are accessing the group in their
capacity as researchers, not patients, as well as about the aim and details
of the study, its risks and benefits.
• Privacy: Protect personal information of the site’s members; refrain from
disclosing anything that would allow personal health information to be
inferred about members of the group, including the fact that they are in or
are eligible for the research in question.

Determining Privacy Expectations
A. The fact that some members of the site may feel annoyed or embarrassed by
recruitment advances does not make recruitment unethical.
B. Use website policy and terms of use: Determine whether user annoyance is
based on a reasonable expectation that would be violated by the recruitment
activity. Is the site to be used expressly and only for purposes that do not
include recruitment or research?

“Investigator B wishes to use online “banner ads” to deliver
customized messages for specific individuals or groups based on
their online activity, to increase targeted recruitment for his clinical
trial. In the first instance, he wishes to place banner ads on a
Facebook media group for expectant mothers. In the second
instance, he wishes to use banner ads to deliver customized online
messages for specific individuals or subgroups of individuals based
on their search and browsing history, online profile information, and
the like.”
How do you suggest evaluating respect for privacy and
investigator transparency, and the proposed social media
recruitment in general?

Case study 2:
NORMALIZING
1. More familiar offline approach of the proposed situation: e.g., placing
flyers in physical spaces likely to be frequented by the potential study
population (e.g., placing flyers for a study on depression in pregnancy in
obstetrical offices).
2. Note: The social media site is, while the obstetrical office is not, tracking
and keeping a record of who looks at the ad or expresses interest in it.
Does this difference demand greater IRB scrutiny?

Application to Social Media Platform
A. Tracking data is proprietary: Personal search information on which these
ads are based is part of an algorithm used by the site or advertising
company and is generally not shared with investigators directly.
• Refer to terms of service of website and state (if applicable) that
tracking and data mining activities is publicly disclosed to potential
users before they agree to join.
• Confirm (if applicable) that no information relating to an individual’s
online activity will be collected and retained by the investigator, and
that the language of the banner ad proposed is appropriate prior to
approval.
• Exception: The IRB needs to be informed if the the research team
intends to track responses to its ad in ways that would not normally
occur over Facebook.

B. Permission: Get permission of a moderator from site for advertisement or
other authority connected with the site (similar to permission of a doctor for
placing posters in his/her office)
Note: On many social media platforms, ads are moderated. The approval
process is built in.

Assessing “creepiness”
Some people may find the targeting of individual pregnant women via customized
banner ads “creepy,” or “creepier” than the targeting of pregnant women generally
at an office.
A. “It is doubtful that the mere perception of creepiness has intrinsic ethical
weight or would demand greater protection for social media users.
Overall conclusion: Use of banner ads will typically not involve additional
research risks for potential participants and indeed will be analogous to other
offline recruitment strategies, such as the growing use of algorithms to scan
medical records to identify patients who may be eligible for particular studies.

“Investigator C is a clinical investigator conducting HIV research. To
expedite enrollment, he considers using a location-based social and
dating application directed toward gay and bisexual men. The
platform’s terms of service put no restrictions on who may or may not
join, and are silent on whether the application may be used for
research purposes, neither prohibiting nor expressly per- mitting it.
Investigator C downloads the application to his smartphone, where he
creates a profile that gives him access to information from other users,
and observes that User M has a profile identifying him as age 29, gay,
HIVC, and living in ZIP code 77777. This information suggests that
User M may satisfy the eligibility criteria for Investigator C’s clinical
trial. Investigator C wonders if it would be permissible for him to
contact User M to see if he is interested in enrolling in the protocol.”

Case study 3:
NORMALIZING
1. More familiar offline approach of the proposed situation: e.g.,
approaching individuals leaving a bar frequented by gay men.
2. Note: Whether there is knowledge of disease status matters ethically.
Difference in degree of certainty investigators have about whether
individual is HIV+ and meet the inclusion criteria for the study. User M has
self-identified as HIV+ on his application profile.

A. Restricted of platform: Address the fact that the willingness of users to
disclose their HIV status or other sensitive health information may be
based on an assumption that the site is restricted to romantic uses.
• Refer to the aim and accepted use of the specific application to argue
whether users are in fact justified in thinking that only potential
romantic partners will view their profile.
• If the application is exclusively advertised and used as a romantic
dating service only, users may have a reasonable expectation that
researchers will not view their profile.
• Weigh potential risk against value of the research and the prospects
for seeing it to completion using social media-based recruitment.

B. Non-restricted of platform: I.e., site policy or practice do not limit use to
romantic interactions
• Point out that users tend to encounter coworkers, neighbors, people
(not all of whom are looking for dates with the user—the objection
raises much less concern).
• Point out that concerned users may easily choose not to disclose their
HIV status in their profile.
• Transparency: The application profile created by Investigator C should
be accurate and not misleading. Make it clear why research team is
contacting users of the application (for the purpose of research, rather
than for social reasons).
Conclusion: As long as users do not have a valid expectation that
researchers will not view their profile, and as long as researchers treat
personal information accessed over the application discreetly and
confidentially, this recruitment activity can be ethically acceptable.

What IRB Needs to Know
Examples of social media content for IRB review:
 Layout mockup of the web page, including text and any links
provided to the potential participants
 Text of Google Search ad and a static view of the page to
which the ad will direct traffic
 Text of Facebook post or ad and any images and links that
are included
If the social media content is visible to potential study participants, you
should assume it will need IRB approval.
Let IRB know that your social media recruitment strategy and materials will
comply with existing IRB and applicable FDA regulations related to human
subject research. This means adherence to 21 CFR §56 as explained in the
FDA’s longstanding document titled, “Recruiting Study Subjects – Information
Sheet, Guidance for Institutional Review Boards and Clinical Investigators”.

Protection Against HIPAA Violations and
Inappropriate Posting
1. Pay attention to Protected Health Information (PHI)
1. Draft response messages to manage comments that include PHI,
include them in your IRB protocol for review
Examples:
On Twitter: Dear [@mention]: To protect your privacy, we suggest
you delete your message. Please contact us directly URL/or phone
number
On Facebook: Dear [FIRST NAME]: Thank you for your interest in
our clinical study at Keck Medicine of USC. To ensure the privacy
and confidentiality of [your or your family member’s] health
information, we had to delete your comment. To help answer your
question, please contact us directly via [email], text or phone
[PHONE NUMBER]. We’d be happy to give you a call.

Managing Active Study Participants
 Help them understand that sharing details about their participation
online can …
 distort the results of the study and essentially cause the trial to fail,
 influence how other people perceive or report their own symptoms,
making it hard to tell whether a given drug or treatment is working,
 unblind the study, i.e., if neither the participants nor the clinical trial site
team knows who is on an active drug or a placebo, some participants may
be taking a placebo. Information you share could lead them to report
symptoms that they are not actually experiencing, and
 be misinterpreted by the public, journalists and others.
 TIPS FOR GETTING IT RIGHT

Template Language (Part 1)
 Do discuss your experience confidentially with your
family and other people who are close to you.
 Do talk with your family doctor and other healthcare providers. It’s
important to let them know that you are in a clinical trial.
 Do ask your clinical trial team to provide guidance about where to
obtain reliable educational material online.
 Do keep a journal or take notes on your cell phone so you can make a
list of things to talk about with your clinical trial doctor and study team at
your clinical trial.
C H E C K L I S T

Template Language (Part 2)
 Don’t talk publicly, including online, about your
participation in a clinical trial.
 Don’t post online including on social media about your experience in the
trial, including about side effects or about how you think the drug is working.
 Don’t solicit trial advice or information from online friends or people
other than the primary investigator and study team at your clinical trial site.
 Don’t respond to questions or comments online related to the trial
you’re involved in.
 If you do see study-related posts online, please tell the study team.
C H E C K L I S T

Contact information
Email: katja.reuter@usc.edu
Twitter: @dmsci
Blog: https://digitalmediaandscience.wordpress.com
Katja Reuter, PhD
Online R es our c es
http://sc-ctsi.org/digital-scholar/

Use Digital Media to Recruit Study Participants

Recommended

Recommended

More Related Content

What's hot

What's hot (20)

Viewers also liked

Viewers also liked (7)

Similar to Use Digital Media to Recruit Study Participants

Similar to Use Digital Media to Recruit Study Participants (20)

More from Katja Reuter, PhD

More from Katja Reuter, PhD (20)

Recently uploaded

Recently uploaded (20)

Use Digital Media to Recruit Study Participants