This document summarizes a presentation on using social media tools and metrics to raise awareness of clinical trials and recruit participants. It discusses engaging audiences on social platforms by using interesting, relevant, and motivating messages. The presentation also describes focus groups that identified effective messaging around clinical trials, including normalizing them, emphasizing options and hope, and presenting action steps. Additionally, it summarizes a case study partnering with organizations to increase African Americans' awareness of and participation in a multiple myeloma clinical trial through targeted social media outreach.

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SESSION 5:
Social Media Tools and Metrics

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Presenters
1. Holly Massett, PhD, Senior Behavioral Science Analyst, NCI
- Tools of engagement to raise public awareness around clinical trials
2. Jessica Schindelar, MPH, Health Communications Specialist, CDC
- CDC’s Health Communicator’s Guide to Social Media
3. Joshua Delung, MA, UXC, Senior Manager, ICF
- Measuring success: Key performance indicators vs. metrics vs. measures
4. Erin Fordyce, MS, Med, Research Methodologist, NORC at the University of
Chicago
- Survey tools to recruit hard-to-reach populations in the context of LGBTQ youth

3. Raising Public Awareness of Clinical Trials
Tools of Engagement
06/08/2018
Presented at the NCI Social Media & Clinical Trials Workshop
Holly Massett, Ph.D.
Senior Behavioral Science Analyst
National Cancer Institute

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Engagement as a metric
 With social media, we typically think of metrics we can count:
 # of hits, page opens, click-throughs, completion rates
 But social media messages must first engage their audiences
 Interesting?
 Personally relevant?
 Motivating?
 Tools and strategies exist to identify the strongest messages for our
audiences
 Require upfront commitment (time, resources)
 Believable?
 Credible?

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“The application of commercial marketing techniques to
social problems.” (Social Marketing Report)
• Four P’s
1. Product (the tangible object or service)
2. Place (where & when to reach audience)
3. Promotion (messages & communication channels)
4. Price (barriers & challenges)
• Audience segmentation
• Subgroups of your population that have similar interests,
needs and behavioral patterns
Social Marketing Framework

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NCI clinical trial research efforts
1. Focus group study with patients/caregivers/family history/healthy people:
a. Explored attitudes toward and understanding of clinical trials
b. Identified salient, acceptable messages and creative concepts that would
increase awareness and interest in clinical trials
Published: Massett et al., (2017), Raising public awareness of clinical trials: Development of messages for a national
health communication campaign. Journal of Health Communication
2. Pilot study to promote awareness of a clinical trial among African Americans
a. RQ: Can social marketing principles be used to increase consideration of a
multiple myeloma clinical trial (E1A11) by African Americans?
b. One-year case study conducted by Dr. Catasha Davis in her role as a Health
Communication Intern at NCI

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Focus Groups

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Message concepts addressed behavioral determinants
National Cancer Institute
X
X
X
X
XX
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Important to normalize clinical trials
 Show real people in real situations
• “Something people like me do.”
 Include personal stories
 “Human element”
 Diversity of pictures increases
chances to connect
 Inclusiveness of diseases, types of
people

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Intrinsic rewards resonate strongly
 Positive messages resonate
• “We are where we are because of
clinical trials.”
• Can reduce “guinea pig” image
 Receive state of the art” treatments
• But not “cutting edge” – too drastic
 ”Hope” is necessary
• But it cannot be explicitly stated
• If so, seen as “sugar-coating it” or over
promising

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Altruism is a side benefit but not a main draw
 Overwhelmingly believed that
people join trials to first help
themselves
 Heroism w/ respect to trials is
seen as awkward or distracting
• “Someone who pulled a guy from a
burning building” not seeking tx
 Hero image conjured up “guinea
pig” image
• Heroes “go first”; “do things that others
are not willing to do.”

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Clinical trials as “options”
 Positioning clinical trials as
options encourages “taking
action”
• Important b/c having a disease can
often make one feel out of control
 Direct and to the point with clear
action steps
• “Be your own advocate”
• “Ask your doctor”
• “Consider a clinical trial”
• Credible
• Trusted sources

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Major takeaways
1. “Normalize” trials:
• Trials provide an option for “people like me” to consider as a treatment choice
• The current standard of care was tested in clinical trials at some point
• Trials are state of the art thinking, well-monitored
2. Offer actionable steps to take around their diagnosis
• Present in clear, concise manner
3. “Hope” is essential but must be realistic
• Altruism is a secondary motivator
4. Healthy people are difficult to engage regarding clinical trials

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Multiple Myeloma Case Study

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Randomized Phase III Trial of Bortezomib, LENalidomide and Dexamethasone (VRd) Versus Carfilzomib, Lenalidomide,
Dexamethasone (CRd) Followed by Limited or Indefinite DURation Lenalidomide MaintenANCE in Patients with Newly
Diagnosed Symptomatic Multiple Myeloma (ENDURANCE)
• E1A11 Schema
Pre-
Registration
Randomization
Carfilzomib
Lenalidomide
Dexamethasone
Bortezomib
Lenalidomide
Dexamethasone Lenalidomide
Lenalidomide
Observatio
n
Randomization
Step 0 Step 1 Step 2
• Target accrual: 740 patients
Every month
for 24
months
Take until
progression

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Partnered with Georgia-based organizations
Georgia NCORP insights:
 Low awareness of multiple myeloma overall
 Trial details are challenging to discuss with patients
 High attrition at Step 2 of trial -- patients often opt for transplant after completing induction
treatment
Non-profit organizations:
 Urban League of Atlanta
 Ray of Hope Church
 Atlanta Community Centers/Clinics
 100 Black Men of Savannah
 Black Nurses Association

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Designed & Tested Materials to Increase Awareness

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Social media push for two key timeframes in 2017
March, 2017

19. Facebook -- March
Date of Post
Information
Content
# of people
reached
Reactions, Comments
& Shares
March 2nd General info 30, 055 750
March 16th Disparities 9,808 147
March 20th
New
myeloma
drug
20,918 494
March 30th General info 22,288 428

20. Facebook -- April
Date
Content of
Post
# of people
reached
Reactions,
comments &
shares
April
17th
Disparities 7,438 70
April
25th
Disparities 10,778 126

21. Facebook Feedback
“That picture is exactly what happened to
me. I stood up and felt a pop in my back.
My l1 vertebrae collapsed. After 3 weeks
on muscle relaxers and chiropractor
sessions I had a MRI done and they found
the multiple myeloma.”

22. LinkedIn
“Cancer awareness should reach everyone.
Not many people are aware of Multiple
myeloma. Great job by NCI. “
42 Likes
1 Comment

23. Center to Reduce
Cancer Health
Disparities Blog Post
• Minority Health
Awareness month
• Blog post to highlight
African American
disparities in MM
• 179 visits in April
• The highest number of
visits of all blog post
during the month of April

24. TWITTER
We used 4 Twitter handles during March & April
o @NCI
• 1 tweet
• No data provided
o @NCIcancertrials
• 5 tweets
o @NCICRCHD
• 12 tweets
o @NCImcMedia
• 2 tweets

25. Twitter
Handles Date Retweets Likes Comments
@NCICRCHD 03/3 5 4 1
03/10 2 4 0
03/14 1 1 0
03/18 5 3 0
03/23 4 0 0
03/27 6 1 0
03/27 7 1 0
04/13 3 4 0
04/17 2 0 0
04/17 9 3 0
04/25 5 7 0
05/03 5 1 1
Handles Date Retweets Likes Comments
@NCI 03/2 17 14 0
@NCIcancertrials 03/10 6 2 0
03/14 5 4 0
03/16 3 1 0
03/21 6 7 0
03/27 1 2 0
@NCImcMedia 03/1 1 1 0
04/27 0 0 0

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Major Takeaways
 Partner organizations were very supportive (a huge thanks to each!)
• Our materials and links were disseminated by each of the groups
- Unfortunately we were unable to track metrics related to their contribution
- Had difficulty connecting with patient advocacy groups to participate
 Messages that were designed with audience groups were well received
 Was challenging to coordinate social media outreach between NCI offices
• Resulted in underuse of our well-tested messages & suboptimal retweets
• Potential timing issues with when tweets were sent

27. www.cancer.gov www.cancer.gov/espanol