2. 2
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
4. 4
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?
5. 5
“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
6. 6
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
9. 9
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
10. 10
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
11. 11
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.”
12. 12
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
13. 13
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
15. 15
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
16. 16
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
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
26. 26
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
NORC: the non-partisan and objective research organization NORC at the University of Chicago
Josh DeLung is a senior digital strategist and proven organizational leader with more than 15 years of combined strategic communication experience. His career has focused on building and managing teams who engage users via digital methods and improve their experiences. ICF is a global consulting services company offering digital strategists, data scientists and creatives.
In context of larger NIH effort to identify clinical trial messaging and feasibility of a national communication campaign around clinical trials
12 groups in 3 geographic regions in US; gender and racial mix
Incidence rate 2x higher than white Americans
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)
self-efficacy; reducing perceived risk; normalization of participation; promote potential reward; sense of control; connect to self-standard (altruism)
Uncomfortable with the notion of a child being sick or able to “volunteer” for a clinical trial
“If you are a parent you don’t want to think your kid can end up like this.”
“Children volunteering is a lie.”
Altruism
Previous literature indicated a motivator to be altruism, but images that associated altruism with heroism were receive negatively. Many participants didn’t believe that participating in clinical trials made them a hero. “Heroes do things that others are not necessarily willing to do, and that means I would most likely be first if I was a hero, and being first make me a guinea pig. I don’t want to be a guinea pig.”
The E1A11 Endurance trial is for those that are newly diagnosis with multiple myeloma. It is a phase 3 trial. This trial has a number a quality that make it good for promotion. All patients are receiving some treatment. We know from previous research that patients may be turned away or feel like a guinea pig guinea with the presence of a placebo.
In step 1 patients receive a combination of three drugs. B,L, D are the standard of care. In the other arm instead of Bortezomib patients receive carflizomib.
In Step 2 of the trial patients are randomized such that some received Lenalidomide for 24 months while the other group receives until progression. The goal is to examine whether progression time is difference. We have spoken with Dr. Shaji Kumar who is the PI for the E1A11 trial. Right now the trial is one track however they are having a hard time getting patients on to step 2.
On Facebook we posted 4 times in March during Multiple Myeloma Awareness month and twice in April. The NCI audience on Facebook is more diverse than on other platforms and therefore we tried a number of message frames including: general information post, disparities frames and information about new drugs. Our posts with general information (March 2nd and 30th) performed the best. Disparities frames posts did not do as well.
It is important to note that CTEP does not have its own social media. We send out messages through OCPL and therefore have to follow certain guidelines.
100 shares is considered good;
We posted on Facebook twice in April. Again these posts were framed as disparities message. They did not do well. There is one caveat here: We worked with the Office of Communication and Public Liaison on the Post from April 25th because we found the charts and pictures of cells were not working well. Our disparities post did the best and we got feedback on a commenter on FB. (Next slide)
We also used LinkedIn, which is a more professional platform. So we had hoped to target doctors and medical professional with our messages. We also got some good feedback with one commenter writing “Cancer awareness should reach everyone. Not many people are aware of multiple myeloma. Great job by NCI.”
We worked with the Center to Reduce Cancer Health Disparities to write a blog post about African American disparities during National Minority Health Month. Catasha co-authored with blog post with Dr. Kumar, who is the PI of E1A11 and Dr. Rich Little who is the CTEP myeloma expert.
We used 4 Twitter handles,; however, our tweets weren’t as successful.