Presentation made at eyeforpharma by Greg Cohen, Global Multi-Channel Lead at UCB Pharma - excellent!
Voice-Over can be accessed under:
https://s3.amazonaws.com/efpharma/Philadelphia2016/Content+%2815+March%29/Greg+Cohen+audio.MP3
19. @gcohen85 #e4pCE
Combing through these collections of digital artifacts can yield
robust, longitudinal patient-as-hero journey mappings
IMS Health - Nexxus Social Media
20102005 2007 2011 20132012 2014
Symptom
Headaches and
fatigue
Grand mal seizure
Other seizures
along with Tonic
clonic
Seizures
increased
Tonic clonic
seizures
30 seizures/day
Diagnosis
Misdiagnosed as
pituitary adenoma
and migraine
Epilepsy diagnosis
Treatment Started on ###
May: VNS*
surgery and
treatment with
###
June:
Reduction of
dose followed
by seizures
October:
Switchover from
###
July: Addition
of ###
February:
Adjustment of
VNS*
April: Patient
on ###; Higher
dose of
###and
withdrawal of
###
February:
Addition of
###; Brain
surgery to
remove left
temporal and
left occipital
January:
Switchover from
### to ###
due to in-
efficacy
September:
Switchover from
### to ###
Outcome
Drug did not
work; GP
referred patient
to epileptologist
Side effects on
###triggered
switchover to
###
Stopped ###
due to side
effect issues
Reduction of
seizures
Side effects
triggered
switchover from
### to ###
Amanda (diagnosed
at the age of 14)
20. @gcohen85 #e4pCE
20
Frodo: I wish the ring had never come to me. I wish
none of this had happened.
Gandalf: So do all who live to see such times, but that
is not for them to decide. All we have to decide is
what to do with the time that is given us.
23. @gcohen85 #e4pCE
Online users discussed patient stories and shared articles related to
key therapeutic area as well as treatments
IMS Health - Nexxus Social Media
10%
Alternative treatment
7%
Quality of life
1%
Others*
Tree Map depicting themes of conversation on ### (N=1,107)
5%
Efficacy and side effects of
### drugs
8%
Symptoms and diagnostic tests
for ###
3%
Diet and lifestyle
2%
Financial issues
1%
Dosing and administration of
drugs
30%
Conversations were about ###
patient stories, fundraisers for
them, and awareness campaigns
on epilepsy
23%
Sharing and discussion of news
and research articles on ### and
### drugs
10%
Treatment experiences of patients
24. @gcohen85 #e4pCE
Cost of drugs
Conversation analysis reveals highest priority topics
that patients are seeking
Emotional support
Lack of knowledge among
doctors
Information needs
Low quality of life
Alternative treatment options
Concerns and unmet needs (N=92)
28%
22%
19%
15%
5%
Patients are unfamiliar with the
signs and symptoms of ###
Patients and caregivers
mentioned limited access to
alternative treatment options for
###
Patients sought emotional
support and mentioned about the
absence of patient support groups
11%
Insights Verbatim
“We have to relocate To
California for that reason To
secure Medical Cannabis for
him”
“have ##.this changed my life, my
long-term memory, my lifestyle,
my independence”
“the insurance would only cover
$508/month of the cost of this
relatively new ###drug. So I was
stuck paying the rest. ”
“###worry me. I live alone and
have no supports so if I go down,
I'm not sure what will happen”
“My current specialist didn’t
believe I have ###.After 5 years..i
knw I did..never diagnosed”
“Has anybody noticed a
connection between ### and
###?”
Expensive ### drugs for
treatment was a concern as well
Patients mentioned the low
quality of life due to ###
Patients mentioned that improper
guidance of physicians sometimes
led to delayed diagnosis
IMS Health - Nexxus Social Media
29. @gcohen85 #e4pCE
Surveyed social communities to gain
insight that patients value a caring
attitude and higher levels of service over
physician time
29
Source: UCB survey analysis, n = 288
31. @gcohen85 #e4pCE
Follow up survey utilized advanced free-
text analytics to understand how patients
assign value…what will come next???
31
Spending time
with doctor
Knowledgeable staff &
state-of-the-art facilities
Relationship &
conversation
with doctor
Insurance, cost, and
access to medicine
Source: UCB survey analysis, n = 525
33. @gcohen85 #e4pCE
With personal acceptance and community
development, patients go from a ‘victim’ mentality…
33
…to a
“champion”
mindset!
34. @gcohen85 #e4pCE
Coping With Parkinson’s Contest combined active
social listening with audience engagement to create
new pilot programs for Parkinson’s patients
34
35. @gcohen85 #e4pCE
My Four Words… a social campaign to drive
engagement that started offline…
35
Encourage patients to
explain their experience
living with epilepsy in a mere
4 words
It included local and national
events and media outreach…
36. @gcohen85 #e4pCE
Online-to-Offline Engagement
A personalized welcome reflected our
commitment to patients as individuals
36
Online engagement enabled us to personally
connect at the National Epilepsy Walk
42. @gcohen85 #e4pCE
Understanding goes beyond demographics
into psychographic understanding of who
your audience really is
42
Source: Facebook Audience Insights for the Epilepsy Advocate Page – dated October 13, 2015
43. @gcohen85 #e4pCE
As well as understanding how they are
connecting with your platforms
43
Source: Facebook Audience Insights for the Epilepsy Advocate Page – dated October 13, 2015
45. @gcohen85 #e4pCE
Build relationships the right way to
utilize #influence
45
Regulatory
bodies exist
to protect
patients
Come from the
right place
Don’t intend to
deceive –
intend to
educate using
known rules
When in
doubt,
DISCLOSE
There is no
substitute for
REAL brand
advocates
49. @gcohen85 #e4pCE
Key Takeaways
49
Social data does not necessarily mean a social response -
be creative with how you apply insights to your business
Don’t overlook social as a ‘vocal minority’ – these voices
are just as potent (if not more so) as your official messages
Look for opportunities to co-create
Don’t be afraid of massive amounts of unstructured data
(i.e. free text) – find experts to help you navigate and make
sense of the mess
Share, share, share – you never know who within your
company will be inspired with the next big idea