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Social Media Data:
Opportunities and Insights
for Clinical Research
Elodie de Bock, PhD
Senior Principal
Patient Centred Outcomes
ICON plc
elodie.debock@iconplc.com
Valentin Barbier, MSc
Research Associate
Patient Centred Outcomes
ICON plc
valentin.barbier@iconplc.com
Adel Mebarki, MBA
General Manager & Co-Founder
Health Technology
Kap Code
adel.mebarki@kapcode.fr
Joelle Malaab, MSc, MPH
International Project Manager
Health Technology
Kap Code
joelle.malaab@kapcode.fr
Social media data:
Opportunities and insights
for clinical research
A bit of theory: Social media listening and natural language processing
Application in real world setting: Merck case study
Testimonies: Nearly 2,000 from 262 patients and 679 caregivers
Results: Tables and graphs
Some interesting findings: Testimonies provide real world data that can be used to improve
the care process and patient quality of life
Perspectives for industry: Strengths of collecting the voices of patients and caregivers
throughout the full product life cycle
3
Today’s webinar agenda
Q&A
4
Thanks to…
– Paul Loussikian, Pierre Foulquié, Simon Renner and Stephane Schuck (Analyses)
– Alexia Marrel (Qualitative input)
– Murtuza Bharmal (Sponsor)
5
From Social Network
Data to Patient Insights
6
Real time data
Primary & Secondary
Databases
A new world disrupted by data
Data collected through digital health technologies,
including apps and wearables.
For example: Hospital Episode Statistics, Prescription
data, etc.
For example, Drug Safety Monitoring Data
Data representing patients and service users’ views and
experiences, captured online
Public Health and Social Care authorities’ datasets
Data collected by patient organization
New types of data, among many others
Surveillance
& Monitoring
Social Media
Patient
Organisation
Data
Public
Datasets
7
Conversations on social networks provide
insights into:
– The fears and hopes associated with their treatments
– Their daily difficulties and needs in managing their
disease
– The impact of their disease on their health-related
quality of life
– The real-life stages of the care pathway and patient
perceptions
– Reactions to health policies
Social networks cannot be ignored!
They can influence treatment decisions and change management. Patients gather in digital communities to get answers and share
their experiences
Social network data: A powerful tool to understand
patient perspective
8
PRODUCT LIFECYCLE
LIFECYCLE
NO PHASE
RESEARCH
PRECLINICAL
& PHASE I
PHASE II PHASE III REGISTRATION PERI-POST
APPROVAL
Existing treatments’ experience perception: fears, hopes, challenges and unmet needs
Disease experience perception: daily difficulties and needs in disease management
Treatment experience
Gather patient insights throughout the full product life cycle
Patient insights, useful at each stage
9
Illustrations - Tools
Developed by Kap Code
10
Kap Code is a startup, spin off from the CRO Kappa Santé, dedicated to the analysis of real-life data and
more specifically data from social networks using artificial intelligence and NLP methods that translate
patient language into medical ontologies
DEDICATED TO THE
HEALTH SECTOR
SCIENTIFIC
EXPERTISE FOR OVER
15 YEARS
MULTIDISCIPLINARY TEAM
WITH MEDICAL
EXPERTISE
60 SCIENTIFIC WORKS
PUBLISHED
10
Kap Code in a few words
11
Algorithms developed internally
Discussion topics
Specialty
Age, Sex
Difficulties encountered
Unmet needs
Creation of personas
Geolocation
Discussion topics
Care pathway
Quality of life
Difficulties encountered
Unmet needs
Creation of personas
Age, Sex
Geolocation
Perception
Care pathway
Quality of life
Difficulties encountered
Diagnostic error
Unmet needs
Vaccine perception
Disinformation
Identification of suicidal thoughts
Treatment intake
Therapeutic switch
Misuse
Signal detection
Discussion topics
Quality of life
Difficulties encountered
Unmet needs
Creation of personas
Age, Sex
Geolocation
Addressable digital populations
Patient
HCPs
Caregivers
Pathologies
Other
Treatment
12
How does it work?
SOURCES
Generic and
specialized
Extraction Dataset
Pre-processing
Association rules
Topic models
Clustering
Topics of
discussions
Web users
typologies
Quality of Life
impacts
TERMINOLOGY
Lexical fields
(ex: healthcare pathway)
Encountered
difficulties
MODELING
ANALYSIS
Medical Vocabulary
(MedDRA)
Social networks and open
access forums, in
compliance with the GDPR
Patient journey
Detec’t – best in class AI for healthcare
13
I. II. III.
Important populations Quick & Accurate
Financial
Optimization
OBSERVE
à Infodemiology studies to
understand patients’ behaviour
à Health Related Quality of Life data
extraction
à Medical unmet needs and pain
points identification
à Care pathway analysis
à Patient & Caregivers recruitment
via Social networks
à Applied to Observational studies,
Focus groups and Clinical trials
ENGAGE
à Pharmacovigilance early signal
detection
à Fake news early detection
à Competition monitoring
MONITOR & ALERT
14
14
Detec’t is an
automated social
network analysis
based on methods of
artificial intelligence
and text mining
Detec’t methodology
Yesterday I had an appointment at the hospital
with my OBGYN et and it seems that my
pregnancy get complicated, due to my
medications ... #FML
Yesterday I had an appointment at the
hospital with my OBGYN et and it seems that
my pregnancy get complicated, due to my
medications ... #FML
Pronoun
Verb
Event
Medical centre Healthcare
practicioner
Pregnancy
Therapeutics
Problematic
«Yesterday I had an appointment at the
hospital with my OBGYN et and it
seems that my pregnancy get
complicated, due to my medications ...
#FML »
1st category 2nd category 3rd category
EXTRACTION
ENTITY
DETECTION
STEMMING
MESSAGE
CLASSIFICATION
15
Application in
Real World Setting
16
Locally Advanced or
Metastatic Bladder
Cancer Online Study in
the United States
17
Study objectives
Main topics of discussion Challenges and Unmet Needs
Treatment experience
perception
Phase 1 Phase 2 Phase 3
A social media study was conducted to improve Merck's knowledge of patients with locally advanced or metastasized
bladder cancer and their caregivers based in the United States1,2
These social media data were collected in 3 phases as shown below:
The study is based on the total volume of testimonies retrieved with their evolution over time. It also includes the typology
of online users (age and gender when available), as well as the distinction between patients and caregivers. The final
results presented are accompanied by examples of anonymized testimonies to support the findings
1 Renner S. et al. Perceived Unmet Needs in Patients Living With Advanced Bladder Cancer and Their Caregivers: Infodemiology Study Using Data From Social Media in the United States, JMIR Cancer 2022; 8(3)
2 Bharmal M. et al. Patient and Caregiver Perception of Treatments for Locally Advanced or Metastatic Bladder Cancer: Insights from Social Media in the US, ISPOR 2022, Washington, DC, USA
18
WEB
Focus on testimonies discussing
advanced urothelial/bladder cancer
Extraction
Methodology
A 3-step extraction and filtration strategy was used to obtain a corpus of reliable caregiver and patient testimonies.
A qualitative analysis was then carried out to deepen and collect information on the challenges and unmet needs experienced by
these caregivers and these patients
144 029
testimonies
68 079
users
Removal of
nonmedical sources
1
Identification of patients’ &
caregivers’ experiences
2
3
Caregiver CORPUS
1,214
testimonies
679 caregivers
Quick Reminder
Qualitative analysis focusing on the
challenges and unmet needs mentioned in
caregiver testimonies
(saturation has been checked)
Patient CORPUS
688
testimonies
262 patients
“My husband had stage 4 bladder cancer
treated with removal of bladder and prostate
and construction of neobladder.”
User: person who mentioned bladder cancer online
Patient: person presenting as a bladder cancer patient
Caregiver: patient's relative involved or not in the care
19
General descriptive data
Evolution of testimonies with a patient or a caregiver experience
regarding advanced BC over time
0
10
20
30
40
50
60
2
0
1
5
-
0
1
2
0
1
5
-
0
3
2
0
1
5
-
0
5
2
0
1
5
-
0
7
2
0
1
5
-
0
9
2
0
1
5
-
1
1
2
0
1
6
-
0
1
2
0
1
6
-
0
3
2
0
1
6
-
0
5
2
0
1
6
-
0
7
2
0
1
6
-
0
9
2
0
1
6
-
1
1
2
0
1
7
-
0
1
2
0
1
7
-
0
3
2
0
1
7
-
0
5
2
0
1
7
-
0
7
2
0
1
7
-
0
9
2
0
1
7
-
1
1
2
0
1
8
-
0
1
2
0
1
8
-
0
3
2
0
1
8
-
0
5
2
0
1
8
-
0
7
2
0
1
8
-
0
9
2
0
1
8
-
1
1
2
0
1
9
-
0
1
2
0
1
9
-
0
3
2
0
1
9
-
0
5
2
0
1
9
-
0
7
2
0
1
9
-
0
9
2
0
1
9
-
1
1
2
0
2
0
-
0
1
2
0
2
0
-
0
3
2
0
2
0
-
0
5
2
0
2
0
-
0
7
2
0
2
0
-
0
9
2
0
2
0
-
1
1
2
0
2
1
-
0
1
2
0
2
1
-
0
3
Number
of
testimonies
per
month
From January 1, 2015
to March 4, 2021
1,902 testimonies
941 patients or caregivers
28% patients (N=262/941)
72% caregivers (N=679/941)
88 sources
20
Phase 1:
Main Topics of
Discussion
21
The main topics of discussion in patient testimonies
Discussions around the diagnosis and
the different treatment possibilities
(traditional or alternative)
35.9 %
Exchange of messages of hope/support
and sharing of patient experiences
16.5 %
Discussions around the healthcare pathway
(patient management, method used for
screening/diagnosis, healthcare team, etc.)
15.2 %
Symptoms and clinical
signs of bladder cancer
8.5 %
Focus on patient quality of life
5.0 %
Others
19.0 %
5
themes
Ø Topics of discussion were identified using the Biterm Topic Modelling, an unsupervised machine learning method that identifies main topics in a
data set and categorizes messages according to these topics
Ø A manual interpretation of the topics then follows
22
Sharing experiences and messages of
hope and support
22.5 %
Complications around bladder cancer
19.1 %
Focus on diagnosis methods and
medical acts
18.3 %
Scientific information on drug
treatments (clinical trials,
scientific articles, etc.)
9.3 %
Discussions around social coverage,
insurance and the financial
aspect around the care
5.3 %
Accompanying the patient in the
terminal phase and until death
7.6 %
Others
17.9 %
6
themes
The main topics of discussion in caregiver testimonies
23
Phase 2: Challenges
and Unmet Needs
Patient Focus
25
Main challenges and unmet needs during the journey*
B E F O R E B L A D D E R C A N C E R A F T E R
T R E A T M E N T / M E D I C A L I N T E R V E N T I O N S – 5 7 . 9 % (n=55)
• 29.5% Fear, occurrence, and management of treatment-related AEs and special
situations
• 7.4% General knowledge/information about a treatment
• 5.3% Difficulty or delay in accessing treatment
D I A G N O S I S &
S C R E E N I N G – 1 7 . 9 %
(number of challenges identified in patients’
testimonials =17)
• 9.5% Misdiagnosis/Prognosis
Error
• 6.3% Screening/Diagnostic delay
or lateness
P A T H O L O G Y – 2 6 . 3 % (n=25)
• 13.7% Progression/ Worsening/ Complication/ Recurrence of Disease
• 9.5% Consideration and management of symptoms of BC
• 2.1% Consideration and management of pain
H A R D S H I P S E X I S T I N G A T A L L S T E P S O F T H E J O U R N E Y / T R A N S V E R S A L – 4 2 . 1 % ( n = 4 0 )
21.1% Psychological impact: loneliness, depression, anxiety, fear, distress, personality change...
8.4% Need for sharing / Experiences / Support: discussion groups, social networks
4.2% Financial impact of the care: insurance, social coverage, cost...
C A R E & F O L L O W - U P – 1 4 . 7 % (n=14)
• 3.2% Burden of care: frequency of hospitalizations, numerous consultations,
emergency room visits, etc.
• 3.2% Disagreement in care: heterogeneity of medical decisions and opinions,
disagreement between patient and medical team
• 3.2% Problems of training or practice of the care team: lack of practice, lack of
knowledge of the pathology
R E M I S S I O N – 8 . 4 % (n=8)
• 7.4% Sequelae of illness or care
I M P A C T O N P A T I E N T E N V I R O N M E N T – 6 . 3 %
• 2.1% Professional impact for the patient: part-time therapy, work interruptions,
etc.
• 2.1% Change in relationship: couple, family, friends
• 2.1% Impact on daily activities
(n=6)
*340 testimonies analyzed of which 95 included challenges or unmet needs
26
21.1%
n=20
13.7%
n=13
9.5%
n=9
9.5%
n=9
8.4%
n=8
7.4%
n=7
7.4%
n=7
6.3%
n=6
5.3%
n=5
29.5%
n=28
1
Fear, occurrence, and management of treatment-related
AEs and special situations
2
Psychological impact
Loneliness, depression, anxiety, fear, distress, personality
change...
3
Progression/Worsening
Complication/Recurrence of Disease
4 Misdiagnosis/Prognosis Error
5 Consideration and management of symptoms of BC
6
Need of Sharing /
Experiences / Support
discussion groups, social networks
7 General knowledge/information about a treatment
8 Sequelae of illness or care
9
Screening/Diagnostic
delay or lateness
10 Difficulty or delay in accessing treatment
Main unmet needs and challenges mentioned in
patients’ testimonies*
*340 testimonies analyzed of which 95 included challenges or unmet needs
TOP
10
Caregiver Focus
28
Main challenges and unmet needs during the journey*
B E F O R E B L A D D E R C A N C E R A F T E R
T R E A T M E N T / M E D I C A L I N T E R V E N T I O N S – 3 5 . 0 % (n=62)
• 12.4% Fear, occurrence, and management of treatment-related AEs and special
situations
• 6.2% Wandering, therapeutic dead ends or ineffective treatments
• 5.6% Difficulty or delay in accessing treatment
D I A G N O S I S &
S C R E E N I N G – 1 5 . 3 %
(number of challenges identified in caregivers’
testimonials =27)
• 7.3% Screening/Diagnostic delay
or lateness
• 4.0% Fear/Shock of the diagnosis
disclosure
• 3.4% Misdiagnosis/Prognosis
Error
P A T H O L O G Y – 2 3 . 2 % (n=41)
• 6.2% Consideration and management of symptoms of BC
• 5.1% Progression/ Worsening/ Complication/ Recurrence of Disease
• 3.4% Altered general condition: fatigue, weight loss
H A R D S H I P S E X I S T I N G A T A L L S T E P S O F T H E J O U R N E Y / T R A N S V E R S A L – 5 0 . 8 % ( n = 9 0 )
26.0% Psychological impact: loneliness, depression, anxiety, fear, distress, personality change...
15.8% Need for sharing / Experiences / Support: discussion groups, social networks
4.5% Financial impact of the care: insurance, social coverage, cost...
C A R E & F O L L O W - U P – 1 2 . 4 % (n=22)
• 3.4% Communication problems: lack of empathy, lack of information transmission
• 2.3% Disagreement in care: heterogeneity of medical decisions and opinions,
disagreement between patient and medical team
• 2.3% Difficulty in accessing care: distance from the place of care, medical desert,
difficulty in making an appointment, insufficient number of HCPs, lack of availability of
HCPs or specialists
R E M I S S I O N – 4 . 0 % (n=7)
• 3.4% Sequelae of illness or care
E N D O F L I F E & D E A T H –
1 2 . 4 % (n=22)
• 10.2% Burden of end-of-life support for the
patient or loved ones & grief work
• 2.3% End-of-life management and
palliative care
I M P A C T O N P A T I E N T E N V I R O N M E N T – 1 7 . 0 %
• 9.6% Impact of being a caregiver: energy-consuming support for caregivers,
time-consuming, moving...
• 5.1% Change in relationship: couple, family, friends
• 1.1% Impact on daily activities
(n=30)
*423 testimonies analyzed of which 177 included challenges or unmet needs
29
15.8%
n=28
12.4%
n=22
10.2%
n=18
9.6%
n=17
7.3%
n=13
6.2%
n=11
6.2%
n=11
5.6%
n=10
5.1%
n=9
26.0%
n=46
1
Psychological impact
Loneliness, depression, anxiety, fear, distress, personality
change...
2
Need of Sharing /
Experiences / Support
discussion groups, social networks
3
Fear, occurrence, and management of treatment-related
AEs and special situations
4
Burden of end-of-life support for the patient or loved ones
& grief work
5
Impact of being a caregiver
energy-consuming support for caregivers, time-consuming,
moving...
6
Screening/Diagnostic
delay or lateness
7
Wandering, therapeutic dead ends or ineffective
treatments
8
Consideration and management of symptoms
characteristic of BC
9 Difficulty or delay in accessing treatment
10
Change in relationship
couple, family, friends
Caregiver Patient Both
Main unmet needs and challenges mentioned in caregivers’ testimonies
whether they are patient-centered, caregiver-centered or both*
*423 testimonies analyzed of which 177 included challenges or unmet needs
TOP
10
30
Caregiver Patient Both
n=18
n=17
15.8%
n=28
n=7
n=5
n=9
n=3
n=4
1.7%
n=3
26.0%
n=46
1
Psychological impact
Loneliness, depression, anxiety, fear,
distress, personality change...
2
Burden of end-of-life support for the
patient & grief work
3
Impact of being a caregiver
energy-consuming support for
caregivers, time-consuming, moving...
4
Need of Sharing / Experiences /
Support
discussion groups, social networks
5
Fear/Shock of the diagnosis
disclosure
6 Acceptance of the disease
7
Change in relationship
couple, family, friends
8
General knowledge/scientific
information about BC
9
End-of-life management and
palliative care
10 Covid19
n=13
n=11
n=11
n=10
n=6
n=6
n=9
n=6
n=8
n=22
1
Fear, occurrence, and
management of treatment-related
AEs and specials situations
2
Screening/Diagnostic
delay or lateness
3
Wandering, therapeutic dead ends
or ineffective treatments
4
Consideration and management of
symptoms characteristic of BC
5
Difficulty or delay in accessing
treatment
6
Altered general condition
fatigue, weight loss
7 Misdiagnosis/Prognosis Error
8
Progression/Worsening/
Complication/ Recurrence of
Disease
9 Sequelae of illness or care
10
Financial impact of the care:
insurance, social coverage, cost...
RANK BASED ON CAREGIVER-CENTERED CHALLENGES RANK BASED ON PATIENT-CENTERED CHALLENGES
2.8%
6.2%
6.2%
10.2%
9.6%
4.0%
5.1%
3.4%
5.1%
5.6%
3.4%
3.4%
7.3%
12.4%
4.5%
1.7%
2.3%
Main unmet needs and challenges mentioned in caregivers’ testimonies
whether they are patient-centered, caregiver-centered or both*
*423 testimonies analyzed of which 177 included challenges or unmet needs
31
Phase 3: Treatment
Experience Perception
32
General data and overview of the collected perceptions
of treatment
A qualitative analysis was carried out specifically among the testimonies of patients and caregivers on relevant experiences concerning
treatments (n=299), whether chemotherapy OR immunotherapy
è Filtering of testimonies using key words related to the treatment area concerned
Overall treatment intake
80%
20%
All testimonies
(n=299)
Treatment was
not taken
Treatment was
taken
Patient testimonies
Overall perception of treatment
88% 12%
Caregiver testimonies
Treatment was
taken
Treatment was
not taken
Patient
testimonies
Caregiver
testimonies
All
testimonies
(n=122)
(n=177)
(n=299) (n=177) (n=122)
Treatment was
taken
Treatment was
not taken
45%
33%
5%
17%
No perception
expressed
Negative
Mixed
Positive
37%
43%
7%
13%
No perception
expressed
Negative
Mixed
Positive
57%
18%
2%
23%
No perception
expressed
Negative
Mixed
Positive
CHEMOTHERAPY : 222 testimonies (80 from patients / 142 from caregivers)
IMMUNOTHERAPY : 77 testimonies (42 from patients / 35 from caregivers)
75% 25%
Chemotherapy Focus
34
52% 36% 5% 7%
71% 23% 6%
Overall data on perceptions of chemotherapy
Overall perception of treatment
Caregiver
posts
Patient
posts
All
testimonies
(n=222)
(n= 80)
(n= 142)
INSIGHTS
“Hello. I’ve been recently been dx’d with muscle invasive bladder
cancer which involves the urethra and a lymph node. Was
scheduled for surgery on August 18 first, but then canceled so
that I get chemo treatments first. Had the first one last
week and going for the 2nd one this week.”
Patient
“I knew what to expect and how miserable chemo was gonna be... I
suggest doing research to prepare yourself. […] It will be okay chemo is
so bad, minus the sickness and all. Family will get you threw this too! I
believe mine just came back after 3 years and am pretty nervous for my
sons sake. Its never fun hearing the doctor say "time for another round“.”
Overall treatment intake
84%
16%
All posts
(n=222)
Treatment was
not taken by
patients
Treatment was
taken by
patients
Patient posts
87% 13%
Caregiver posts
Treatment was
taken
Treatment was
not taken
(n=80)
(n=142)
Treatment was
taken by patients
Treatment was not
taken by patients
No perception expressed
Negative
Mixed Positive
No perception expressed
Negative
Positive
Negative
No perception expressed Mixed Positive
q Chemotherapy treatments are perceived more negatively (36%) than positively
(7%) overall, both in patient and caregiver testimonies
q Main perceived benefits of chemotherapy: effectiveness, extension of life span, and few
adverse events
q Main perceived drawbacks of chemotherapy: adverse events/pain, lack of effectiveness,
and access criteria
Caregiver
CHEMOTHERAPY : 222 testimonies (80 from patients / 142 from caregivers)
73% 27%
41% 44% 8% 7%
Immunotherapy focus
36
26% 22% 5% 47%
29% 9% 7% 55%
Overall data on perceptions of immunotherapy
Overall perception of treatment
Caregiver
testimonies
Patient
testimonies
All
testimonies
(n=77)
(n= 42)
(n= 35)
INSIGHTS
“If so I just want you to know that Opdivo an
immunotherapy drug caused my metastatic lymph nodes to
disappear in 2 weeks. […] and the life saving Opdivo is
keeping the cancer that would kill me sooner at bay.”
Patient
“My husband was diagnosed with stage 4 bladder cancer (both small
cell and transitional cell carcenoma). He is currently taking
immunotherapy which has kept the other cancer at microscopic size
which has had numerous side effects like loss of taste buds
and loss of the adrenal and pituitary glands.”
Overall treatment intake
78%
22%
All testimonies
(n=77)
Treatment was
not taken
Treatment was
taken
Patient testimonies
88% 12%
Caregiver testimonies
Treatment was
taken
Treatment was
not taken
(n=42)
(n=35)
80% 20%
Treatment was
taken
Treatment was
not taken
No perception expressed
Negative
Mixed Positive
No perception expressed
Negative
Positive
Negative
No perception expressed Mixed Positive
Mixed
q Immunology treatments are perceived positively in almost half of the testimonies (47%)
q The perception of immunology treatments is more negative in caregivers' testimonies (37%)
than in patients' testimonies (10%)
q Main perceived benefits of immunotherapy: effectiveness, few adverse events, targeted therapy
q Main perceived drawbacks of immunotherapy: lack of effectiveness, AE/pain, and long-term
sequelae
Caregiver
IMMUNOTHERAPY : 77 testimonies (42 from patients / 35 from caregivers)
23% 37% 3% 37%
37
Conclusion and
Key Insights
38
Take away messages
Numerous patients and their caregivers share their voices about bladder cancer and its advanced forms on
social media in the USA. They share their concerns, challenges but also their perception of treatments. These
testimonies provide real-world data that can be used to improve the care process and quality of life
Importance of the
psychological aspect,
even for caregivers
Importance of information
about adverse events and
their management
Importance of support
services for patients and
their caregivers
39
Summary of Key
Findings & Perspective
40
– Social network data: real-world data that provide very rich panel information to
analyse patient and caregiver perspectives about disease and treatment
– This informs, clarifies and highlights the unmet needs in disease management
and in existing treatments
– Gather patient insights throughout the full product life cycle using social
network data can be a powerful strategy
– This can be used to:
– Improve the care process and the quality of life of patients
– Enhance adherence to treatment
– Tweak the perception of a specific treatment
– Etc.
To remember
41
ICON webinar series 2022: Upcoming events
14 December 2022 11:00am ET
Home health: Best practice and processes to build confidence in the
value of in-home services
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Social Media Data: Opportunities and Insights for Clinical Research

  • 1. Copyright 2022. All Rights Reserved. Contact Presenter for Permission Social Media Data: Opportunities and Insights for Clinical Research Elodie de Bock, PhD Senior Principal Patient Centred Outcomes ICON plc elodie.debock@iconplc.com Valentin Barbier, MSc Research Associate Patient Centred Outcomes ICON plc valentin.barbier@iconplc.com Adel Mebarki, MBA General Manager & Co-Founder Health Technology Kap Code adel.mebarki@kapcode.fr Joelle Malaab, MSc, MPH International Project Manager Health Technology Kap Code joelle.malaab@kapcode.fr
  • 2. Social media data: Opportunities and insights for clinical research
  • 3. A bit of theory: Social media listening and natural language processing Application in real world setting: Merck case study Testimonies: Nearly 2,000 from 262 patients and 679 caregivers Results: Tables and graphs Some interesting findings: Testimonies provide real world data that can be used to improve the care process and patient quality of life Perspectives for industry: Strengths of collecting the voices of patients and caregivers throughout the full product life cycle 3 Today’s webinar agenda Q&A
  • 4. 4 Thanks to… – Paul Loussikian, Pierre Foulquié, Simon Renner and Stephane Schuck (Analyses) – Alexia Marrel (Qualitative input) – Murtuza Bharmal (Sponsor)
  • 5. 5 From Social Network Data to Patient Insights
  • 6. 6 Real time data Primary & Secondary Databases A new world disrupted by data Data collected through digital health technologies, including apps and wearables. For example: Hospital Episode Statistics, Prescription data, etc. For example, Drug Safety Monitoring Data Data representing patients and service users’ views and experiences, captured online Public Health and Social Care authorities’ datasets Data collected by patient organization New types of data, among many others Surveillance & Monitoring Social Media Patient Organisation Data Public Datasets
  • 7. 7 Conversations on social networks provide insights into: – The fears and hopes associated with their treatments – Their daily difficulties and needs in managing their disease – The impact of their disease on their health-related quality of life – The real-life stages of the care pathway and patient perceptions – Reactions to health policies Social networks cannot be ignored! They can influence treatment decisions and change management. Patients gather in digital communities to get answers and share their experiences Social network data: A powerful tool to understand patient perspective
  • 8. 8 PRODUCT LIFECYCLE LIFECYCLE NO PHASE RESEARCH PRECLINICAL & PHASE I PHASE II PHASE III REGISTRATION PERI-POST APPROVAL Existing treatments’ experience perception: fears, hopes, challenges and unmet needs Disease experience perception: daily difficulties and needs in disease management Treatment experience Gather patient insights throughout the full product life cycle Patient insights, useful at each stage
  • 10. 10 Kap Code is a startup, spin off from the CRO Kappa Santé, dedicated to the analysis of real-life data and more specifically data from social networks using artificial intelligence and NLP methods that translate patient language into medical ontologies DEDICATED TO THE HEALTH SECTOR SCIENTIFIC EXPERTISE FOR OVER 15 YEARS MULTIDISCIPLINARY TEAM WITH MEDICAL EXPERTISE 60 SCIENTIFIC WORKS PUBLISHED 10 Kap Code in a few words
  • 11. 11 Algorithms developed internally Discussion topics Specialty Age, Sex Difficulties encountered Unmet needs Creation of personas Geolocation Discussion topics Care pathway Quality of life Difficulties encountered Unmet needs Creation of personas Age, Sex Geolocation Perception Care pathway Quality of life Difficulties encountered Diagnostic error Unmet needs Vaccine perception Disinformation Identification of suicidal thoughts Treatment intake Therapeutic switch Misuse Signal detection Discussion topics Quality of life Difficulties encountered Unmet needs Creation of personas Age, Sex Geolocation Addressable digital populations Patient HCPs Caregivers Pathologies Other Treatment
  • 12. 12 How does it work? SOURCES Generic and specialized Extraction Dataset Pre-processing Association rules Topic models Clustering Topics of discussions Web users typologies Quality of Life impacts TERMINOLOGY Lexical fields (ex: healthcare pathway) Encountered difficulties MODELING ANALYSIS Medical Vocabulary (MedDRA) Social networks and open access forums, in compliance with the GDPR Patient journey
  • 13. Detec’t – best in class AI for healthcare 13 I. II. III. Important populations Quick & Accurate Financial Optimization OBSERVE à Infodemiology studies to understand patients’ behaviour à Health Related Quality of Life data extraction à Medical unmet needs and pain points identification à Care pathway analysis à Patient & Caregivers recruitment via Social networks à Applied to Observational studies, Focus groups and Clinical trials ENGAGE à Pharmacovigilance early signal detection à Fake news early detection à Competition monitoring MONITOR & ALERT
  • 14. 14 14 Detec’t is an automated social network analysis based on methods of artificial intelligence and text mining Detec’t methodology Yesterday I had an appointment at the hospital with my OBGYN et and it seems that my pregnancy get complicated, due to my medications ... #FML Yesterday I had an appointment at the hospital with my OBGYN et and it seems that my pregnancy get complicated, due to my medications ... #FML Pronoun Verb Event Medical centre Healthcare practicioner Pregnancy Therapeutics Problematic «Yesterday I had an appointment at the hospital with my OBGYN et and it seems that my pregnancy get complicated, due to my medications ... #FML » 1st category 2nd category 3rd category EXTRACTION ENTITY DETECTION STEMMING MESSAGE CLASSIFICATION
  • 16. 16 Locally Advanced or Metastatic Bladder Cancer Online Study in the United States
  • 17. 17 Study objectives Main topics of discussion Challenges and Unmet Needs Treatment experience perception Phase 1 Phase 2 Phase 3 A social media study was conducted to improve Merck's knowledge of patients with locally advanced or metastasized bladder cancer and their caregivers based in the United States1,2 These social media data were collected in 3 phases as shown below: The study is based on the total volume of testimonies retrieved with their evolution over time. It also includes the typology of online users (age and gender when available), as well as the distinction between patients and caregivers. The final results presented are accompanied by examples of anonymized testimonies to support the findings 1 Renner S. et al. Perceived Unmet Needs in Patients Living With Advanced Bladder Cancer and Their Caregivers: Infodemiology Study Using Data From Social Media in the United States, JMIR Cancer 2022; 8(3) 2 Bharmal M. et al. Patient and Caregiver Perception of Treatments for Locally Advanced or Metastatic Bladder Cancer: Insights from Social Media in the US, ISPOR 2022, Washington, DC, USA
  • 18. 18 WEB Focus on testimonies discussing advanced urothelial/bladder cancer Extraction Methodology A 3-step extraction and filtration strategy was used to obtain a corpus of reliable caregiver and patient testimonies. A qualitative analysis was then carried out to deepen and collect information on the challenges and unmet needs experienced by these caregivers and these patients 144 029 testimonies 68 079 users Removal of nonmedical sources 1 Identification of patients’ & caregivers’ experiences 2 3 Caregiver CORPUS 1,214 testimonies 679 caregivers Quick Reminder Qualitative analysis focusing on the challenges and unmet needs mentioned in caregiver testimonies (saturation has been checked) Patient CORPUS 688 testimonies 262 patients “My husband had stage 4 bladder cancer treated with removal of bladder and prostate and construction of neobladder.” User: person who mentioned bladder cancer online Patient: person presenting as a bladder cancer patient Caregiver: patient's relative involved or not in the care
  • 19. 19 General descriptive data Evolution of testimonies with a patient or a caregiver experience regarding advanced BC over time 0 10 20 30 40 50 60 2 0 1 5 - 0 1 2 0 1 5 - 0 3 2 0 1 5 - 0 5 2 0 1 5 - 0 7 2 0 1 5 - 0 9 2 0 1 5 - 1 1 2 0 1 6 - 0 1 2 0 1 6 - 0 3 2 0 1 6 - 0 5 2 0 1 6 - 0 7 2 0 1 6 - 0 9 2 0 1 6 - 1 1 2 0 1 7 - 0 1 2 0 1 7 - 0 3 2 0 1 7 - 0 5 2 0 1 7 - 0 7 2 0 1 7 - 0 9 2 0 1 7 - 1 1 2 0 1 8 - 0 1 2 0 1 8 - 0 3 2 0 1 8 - 0 5 2 0 1 8 - 0 7 2 0 1 8 - 0 9 2 0 1 8 - 1 1 2 0 1 9 - 0 1 2 0 1 9 - 0 3 2 0 1 9 - 0 5 2 0 1 9 - 0 7 2 0 1 9 - 0 9 2 0 1 9 - 1 1 2 0 2 0 - 0 1 2 0 2 0 - 0 3 2 0 2 0 - 0 5 2 0 2 0 - 0 7 2 0 2 0 - 0 9 2 0 2 0 - 1 1 2 0 2 1 - 0 1 2 0 2 1 - 0 3 Number of testimonies per month From January 1, 2015 to March 4, 2021 1,902 testimonies 941 patients or caregivers 28% patients (N=262/941) 72% caregivers (N=679/941) 88 sources
  • 20. 20 Phase 1: Main Topics of Discussion
  • 21. 21 The main topics of discussion in patient testimonies Discussions around the diagnosis and the different treatment possibilities (traditional or alternative) 35.9 % Exchange of messages of hope/support and sharing of patient experiences 16.5 % Discussions around the healthcare pathway (patient management, method used for screening/diagnosis, healthcare team, etc.) 15.2 % Symptoms and clinical signs of bladder cancer 8.5 % Focus on patient quality of life 5.0 % Others 19.0 % 5 themes Ø Topics of discussion were identified using the Biterm Topic Modelling, an unsupervised machine learning method that identifies main topics in a data set and categorizes messages according to these topics Ø A manual interpretation of the topics then follows
  • 22. 22 Sharing experiences and messages of hope and support 22.5 % Complications around bladder cancer 19.1 % Focus on diagnosis methods and medical acts 18.3 % Scientific information on drug treatments (clinical trials, scientific articles, etc.) 9.3 % Discussions around social coverage, insurance and the financial aspect around the care 5.3 % Accompanying the patient in the terminal phase and until death 7.6 % Others 17.9 % 6 themes The main topics of discussion in caregiver testimonies
  • 25. 25 Main challenges and unmet needs during the journey* B E F O R E B L A D D E R C A N C E R A F T E R T R E A T M E N T / M E D I C A L I N T E R V E N T I O N S – 5 7 . 9 % (n=55) • 29.5% Fear, occurrence, and management of treatment-related AEs and special situations • 7.4% General knowledge/information about a treatment • 5.3% Difficulty or delay in accessing treatment D I A G N O S I S & S C R E E N I N G – 1 7 . 9 % (number of challenges identified in patients’ testimonials =17) • 9.5% Misdiagnosis/Prognosis Error • 6.3% Screening/Diagnostic delay or lateness P A T H O L O G Y – 2 6 . 3 % (n=25) • 13.7% Progression/ Worsening/ Complication/ Recurrence of Disease • 9.5% Consideration and management of symptoms of BC • 2.1% Consideration and management of pain H A R D S H I P S E X I S T I N G A T A L L S T E P S O F T H E J O U R N E Y / T R A N S V E R S A L – 4 2 . 1 % ( n = 4 0 ) 21.1% Psychological impact: loneliness, depression, anxiety, fear, distress, personality change... 8.4% Need for sharing / Experiences / Support: discussion groups, social networks 4.2% Financial impact of the care: insurance, social coverage, cost... C A R E & F O L L O W - U P – 1 4 . 7 % (n=14) • 3.2% Burden of care: frequency of hospitalizations, numerous consultations, emergency room visits, etc. • 3.2% Disagreement in care: heterogeneity of medical decisions and opinions, disagreement between patient and medical team • 3.2% Problems of training or practice of the care team: lack of practice, lack of knowledge of the pathology R E M I S S I O N – 8 . 4 % (n=8) • 7.4% Sequelae of illness or care I M P A C T O N P A T I E N T E N V I R O N M E N T – 6 . 3 % • 2.1% Professional impact for the patient: part-time therapy, work interruptions, etc. • 2.1% Change in relationship: couple, family, friends • 2.1% Impact on daily activities (n=6) *340 testimonies analyzed of which 95 included challenges or unmet needs
  • 26. 26 21.1% n=20 13.7% n=13 9.5% n=9 9.5% n=9 8.4% n=8 7.4% n=7 7.4% n=7 6.3% n=6 5.3% n=5 29.5% n=28 1 Fear, occurrence, and management of treatment-related AEs and special situations 2 Psychological impact Loneliness, depression, anxiety, fear, distress, personality change... 3 Progression/Worsening Complication/Recurrence of Disease 4 Misdiagnosis/Prognosis Error 5 Consideration and management of symptoms of BC 6 Need of Sharing / Experiences / Support discussion groups, social networks 7 General knowledge/information about a treatment 8 Sequelae of illness or care 9 Screening/Diagnostic delay or lateness 10 Difficulty or delay in accessing treatment Main unmet needs and challenges mentioned in patients’ testimonies* *340 testimonies analyzed of which 95 included challenges or unmet needs TOP 10
  • 28. 28 Main challenges and unmet needs during the journey* B E F O R E B L A D D E R C A N C E R A F T E R T R E A T M E N T / M E D I C A L I N T E R V E N T I O N S – 3 5 . 0 % (n=62) • 12.4% Fear, occurrence, and management of treatment-related AEs and special situations • 6.2% Wandering, therapeutic dead ends or ineffective treatments • 5.6% Difficulty or delay in accessing treatment D I A G N O S I S & S C R E E N I N G – 1 5 . 3 % (number of challenges identified in caregivers’ testimonials =27) • 7.3% Screening/Diagnostic delay or lateness • 4.0% Fear/Shock of the diagnosis disclosure • 3.4% Misdiagnosis/Prognosis Error P A T H O L O G Y – 2 3 . 2 % (n=41) • 6.2% Consideration and management of symptoms of BC • 5.1% Progression/ Worsening/ Complication/ Recurrence of Disease • 3.4% Altered general condition: fatigue, weight loss H A R D S H I P S E X I S T I N G A T A L L S T E P S O F T H E J O U R N E Y / T R A N S V E R S A L – 5 0 . 8 % ( n = 9 0 ) 26.0% Psychological impact: loneliness, depression, anxiety, fear, distress, personality change... 15.8% Need for sharing / Experiences / Support: discussion groups, social networks 4.5% Financial impact of the care: insurance, social coverage, cost... C A R E & F O L L O W - U P – 1 2 . 4 % (n=22) • 3.4% Communication problems: lack of empathy, lack of information transmission • 2.3% Disagreement in care: heterogeneity of medical decisions and opinions, disagreement between patient and medical team • 2.3% Difficulty in accessing care: distance from the place of care, medical desert, difficulty in making an appointment, insufficient number of HCPs, lack of availability of HCPs or specialists R E M I S S I O N – 4 . 0 % (n=7) • 3.4% Sequelae of illness or care E N D O F L I F E & D E A T H – 1 2 . 4 % (n=22) • 10.2% Burden of end-of-life support for the patient or loved ones & grief work • 2.3% End-of-life management and palliative care I M P A C T O N P A T I E N T E N V I R O N M E N T – 1 7 . 0 % • 9.6% Impact of being a caregiver: energy-consuming support for caregivers, time-consuming, moving... • 5.1% Change in relationship: couple, family, friends • 1.1% Impact on daily activities (n=30) *423 testimonies analyzed of which 177 included challenges or unmet needs
  • 29. 29 15.8% n=28 12.4% n=22 10.2% n=18 9.6% n=17 7.3% n=13 6.2% n=11 6.2% n=11 5.6% n=10 5.1% n=9 26.0% n=46 1 Psychological impact Loneliness, depression, anxiety, fear, distress, personality change... 2 Need of Sharing / Experiences / Support discussion groups, social networks 3 Fear, occurrence, and management of treatment-related AEs and special situations 4 Burden of end-of-life support for the patient or loved ones & grief work 5 Impact of being a caregiver energy-consuming support for caregivers, time-consuming, moving... 6 Screening/Diagnostic delay or lateness 7 Wandering, therapeutic dead ends or ineffective treatments 8 Consideration and management of symptoms characteristic of BC 9 Difficulty or delay in accessing treatment 10 Change in relationship couple, family, friends Caregiver Patient Both Main unmet needs and challenges mentioned in caregivers’ testimonies whether they are patient-centered, caregiver-centered or both* *423 testimonies analyzed of which 177 included challenges or unmet needs TOP 10
  • 30. 30 Caregiver Patient Both n=18 n=17 15.8% n=28 n=7 n=5 n=9 n=3 n=4 1.7% n=3 26.0% n=46 1 Psychological impact Loneliness, depression, anxiety, fear, distress, personality change... 2 Burden of end-of-life support for the patient & grief work 3 Impact of being a caregiver energy-consuming support for caregivers, time-consuming, moving... 4 Need of Sharing / Experiences / Support discussion groups, social networks 5 Fear/Shock of the diagnosis disclosure 6 Acceptance of the disease 7 Change in relationship couple, family, friends 8 General knowledge/scientific information about BC 9 End-of-life management and palliative care 10 Covid19 n=13 n=11 n=11 n=10 n=6 n=6 n=9 n=6 n=8 n=22 1 Fear, occurrence, and management of treatment-related AEs and specials situations 2 Screening/Diagnostic delay or lateness 3 Wandering, therapeutic dead ends or ineffective treatments 4 Consideration and management of symptoms characteristic of BC 5 Difficulty or delay in accessing treatment 6 Altered general condition fatigue, weight loss 7 Misdiagnosis/Prognosis Error 8 Progression/Worsening/ Complication/ Recurrence of Disease 9 Sequelae of illness or care 10 Financial impact of the care: insurance, social coverage, cost... RANK BASED ON CAREGIVER-CENTERED CHALLENGES RANK BASED ON PATIENT-CENTERED CHALLENGES 2.8% 6.2% 6.2% 10.2% 9.6% 4.0% 5.1% 3.4% 5.1% 5.6% 3.4% 3.4% 7.3% 12.4% 4.5% 1.7% 2.3% Main unmet needs and challenges mentioned in caregivers’ testimonies whether they are patient-centered, caregiver-centered or both* *423 testimonies analyzed of which 177 included challenges or unmet needs
  • 32. 32 General data and overview of the collected perceptions of treatment A qualitative analysis was carried out specifically among the testimonies of patients and caregivers on relevant experiences concerning treatments (n=299), whether chemotherapy OR immunotherapy è Filtering of testimonies using key words related to the treatment area concerned Overall treatment intake 80% 20% All testimonies (n=299) Treatment was not taken Treatment was taken Patient testimonies Overall perception of treatment 88% 12% Caregiver testimonies Treatment was taken Treatment was not taken Patient testimonies Caregiver testimonies All testimonies (n=122) (n=177) (n=299) (n=177) (n=122) Treatment was taken Treatment was not taken 45% 33% 5% 17% No perception expressed Negative Mixed Positive 37% 43% 7% 13% No perception expressed Negative Mixed Positive 57% 18% 2% 23% No perception expressed Negative Mixed Positive CHEMOTHERAPY : 222 testimonies (80 from patients / 142 from caregivers) IMMUNOTHERAPY : 77 testimonies (42 from patients / 35 from caregivers) 75% 25%
  • 34. 34 52% 36% 5% 7% 71% 23% 6% Overall data on perceptions of chemotherapy Overall perception of treatment Caregiver posts Patient posts All testimonies (n=222) (n= 80) (n= 142) INSIGHTS “Hello. I’ve been recently been dx’d with muscle invasive bladder cancer which involves the urethra and a lymph node. Was scheduled for surgery on August 18 first, but then canceled so that I get chemo treatments first. Had the first one last week and going for the 2nd one this week.” Patient “I knew what to expect and how miserable chemo was gonna be... I suggest doing research to prepare yourself. […] It will be okay chemo is so bad, minus the sickness and all. Family will get you threw this too! I believe mine just came back after 3 years and am pretty nervous for my sons sake. Its never fun hearing the doctor say "time for another round“.” Overall treatment intake 84% 16% All posts (n=222) Treatment was not taken by patients Treatment was taken by patients Patient posts 87% 13% Caregiver posts Treatment was taken Treatment was not taken (n=80) (n=142) Treatment was taken by patients Treatment was not taken by patients No perception expressed Negative Mixed Positive No perception expressed Negative Positive Negative No perception expressed Mixed Positive q Chemotherapy treatments are perceived more negatively (36%) than positively (7%) overall, both in patient and caregiver testimonies q Main perceived benefits of chemotherapy: effectiveness, extension of life span, and few adverse events q Main perceived drawbacks of chemotherapy: adverse events/pain, lack of effectiveness, and access criteria Caregiver CHEMOTHERAPY : 222 testimonies (80 from patients / 142 from caregivers) 73% 27% 41% 44% 8% 7%
  • 36. 36 26% 22% 5% 47% 29% 9% 7% 55% Overall data on perceptions of immunotherapy Overall perception of treatment Caregiver testimonies Patient testimonies All testimonies (n=77) (n= 42) (n= 35) INSIGHTS “If so I just want you to know that Opdivo an immunotherapy drug caused my metastatic lymph nodes to disappear in 2 weeks. […] and the life saving Opdivo is keeping the cancer that would kill me sooner at bay.” Patient “My husband was diagnosed with stage 4 bladder cancer (both small cell and transitional cell carcenoma). He is currently taking immunotherapy which has kept the other cancer at microscopic size which has had numerous side effects like loss of taste buds and loss of the adrenal and pituitary glands.” Overall treatment intake 78% 22% All testimonies (n=77) Treatment was not taken Treatment was taken Patient testimonies 88% 12% Caregiver testimonies Treatment was taken Treatment was not taken (n=42) (n=35) 80% 20% Treatment was taken Treatment was not taken No perception expressed Negative Mixed Positive No perception expressed Negative Positive Negative No perception expressed Mixed Positive Mixed q Immunology treatments are perceived positively in almost half of the testimonies (47%) q The perception of immunology treatments is more negative in caregivers' testimonies (37%) than in patients' testimonies (10%) q Main perceived benefits of immunotherapy: effectiveness, few adverse events, targeted therapy q Main perceived drawbacks of immunotherapy: lack of effectiveness, AE/pain, and long-term sequelae Caregiver IMMUNOTHERAPY : 77 testimonies (42 from patients / 35 from caregivers) 23% 37% 3% 37%
  • 38. 38 Take away messages Numerous patients and their caregivers share their voices about bladder cancer and its advanced forms on social media in the USA. They share their concerns, challenges but also their perception of treatments. These testimonies provide real-world data that can be used to improve the care process and quality of life Importance of the psychological aspect, even for caregivers Importance of information about adverse events and their management Importance of support services for patients and their caregivers
  • 39. 39 Summary of Key Findings & Perspective
  • 40. 40 – Social network data: real-world data that provide very rich panel information to analyse patient and caregiver perspectives about disease and treatment – This informs, clarifies and highlights the unmet needs in disease management and in existing treatments – Gather patient insights throughout the full product life cycle using social network data can be a powerful strategy – This can be used to: – Improve the care process and the quality of life of patients – Enhance adherence to treatment – Tweak the perception of a specific treatment – Etc. To remember
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  • 42. ICONplc.com © 2022 ICON. All rights reserved. Any questions? Email our presentation author(s) directly! kapcode.fr Thank you!
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