Post on 20-Jun-2015
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Exploratory analysis on hemophilia in social media –
Social essence of patient conversations: managing the
disease, and the unmet needs
PharmARC Social Media Monitoring and Analysis
Tanmay Saraykar, Manager - Social Media Analytics
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 2
Patients’ conversations around hemophilia occur on leading social
networking platforms such as Twitter and Facebook
Summary and
findings
Conversations
1
4
3
Areas of analysis
• Twitter chats overview – Chats with #hemophilia
• Insights from Twitter – Patient conversations, categories of
comments, examples, and social essence
• French group/English groups – Patient concerns/engagement
opportunities
• Availability and quality of care
• Hemophilic parents/mothers, children, elderly patients
• What are patients thinking?
• How do they manage themselves?
• Unmet needs and opportunities
YouTube
2
• Hemophilia-related patient videos on YouTube
• Content overview
• Patients’ challenges
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 3
Activities on Twitter – Conversations among patients of hemophilia US/UK
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 4
Hemophilia patients on Twitter tweet using a hashtag #hemophilia, or
“hemophilia”/“haemophilia”
Twitter hashtag Definition: Words or phrases prefixed with a # sign, used as text
indicators to organize around idea, tweet about certain subjects, or have group
posts around topics
Popular Twitter hashtag for hemophilia : #hemophilia
Duration: August 21, 2011 to
September 7, 2011
Total no. of tweets using #hemophilia,
hemophilia and haemophilia – 566
Average daily tweets – 28
Total tweeting accounts – 225
Most active accounts -
@NHF_Hemophilia
@marktkenny
@HemoHijinks
Top 10 % accounts are the most
influential
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 5
No. of average daily tweets around #hemophilia is 28; monitoring
tweets for a couple of months will give us above 1,700 tweets, i.e.
substantial data for analysis
2
10
25
14
21 23
42
1 6
22
13
60
44
76
33
17
31
62 60
4
0
10
20
30
40
50
60
70
80
20
-Au
g-1
1
21-A
ug-1
1
22
-Au
g-1
1
23
-Au
g-1
1
24
-Au
g-1
1
25-A
ug-1
1
26
-Au
g-1
1
27
-Au
g-1
1
28
-Au
g-1
1
29-A
ug-1
1
30
-Au
g-1
1
31
-Au
g-1
1
1-S
ep
-11
2-S
ep-1
1
3-S
ep
-11
4-S
ep
-11
5-S
ep
-11
6-S
ep-1
1
7-S
ep
-11
8-S
ep
-11
Pattern of daily tweets using #hemophilia, hemophilia and haemophilia (Total # 566 tweets)
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 6
Patient tweets around hemophilia (using #hemophilia) can be
categorized into various buckets such as awareness, events, news,
social sharing, etc.
Hemophilia Patient/Social
Support 5%
Fundraising 7%
Hemophila disease,
Research and Treatment
7%
Expression/ Empathy/Social
Sharing 7%
Knowledge/Tips sharing/Que.
8%
Hemophilia Related Events
9% Awareness
18%
Significant News/Related
Articles 19%
Junk 20%
1. Hemophilia
Patient/Social Support
– (27)
2. Fundraising – (39)
3. Hemophilia disease,
Research and
Treatment – (40)
4. Expression/Empathy/
Social Sharing – (42)
5. Knowledge/Tips
sharing/Questions –
(46)
6. Hemophilia Related
Events – (51)
7. Awareness – (100)
8. Significant News/
Related Articles –
(104)
9. Junk – (113)
Disease aspect
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 7
Summary of various categories of tweets around # hemophilia
Mutual interaction among
the patients to share their
experiences for managing
the disease condition
Depression and mood
change can be restricted by
social involvement only
Being a hemophilic there is
nothing for which one
should feel humiliated
Helps in fighting the
disease with motivation
Motivational boost up for
caregivers and patients
Patient/Social Support Fundraising
Fund raising programs
Hemophilia walk
Hemophilia
Foundation golf tour
Entertainment houses
and production
houses’ performance
for funds
Halloween fundraiser
carnival
Beauty for charity for
hemophilic patients
Various shopping
complexes offering their
10% sale to be donated to
hemophilic foundations
Disease Research Treatment
Need for diagnostic
techniques which reduce
recurrent check-ups to
manage the disease
Difficulties in managing older
hemophilic patients’
conditions
Professionals need to be
updated with the latest
developments in the medical
aspects of this disease
Need for research in context
to the use of pain killers
which can allow blood to clot
simultaneously
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 8
Guidelines for
school/college going
hemophilic patients
Stay connected due to
impact of hemophilia on
families
Are they staring at my
hemophilic bruises, at my
needle marks – Getting
used to stares
Will my son grow up to be
the only sibling?
Expression/Empathy/Sharing Knowledge/Tips/Questions Hemophilia Related Events
Tips for living healthy with
hemophilia, such as
Exercising tips, Yoga,
Nutritional tips, etc.
Expressing opinions - Use
of port for infusion have
great risk of infection
Application of ice along with
infusion helps a lot
Pregnancy related
guidelines – Pushing
stages of labor, Birth plans
for baby who may have
hemophilia, medication, etc.
Adventurous trips by
various teams for support of
Hemophilic foundations
Organizing hemophilic
dinner (CME) for healthcare
professionals
Organizing annual NHF
meeting, conferences,
symposium, social media
roundtable conferences
Workshop in association
with pharmaceutical firms
Summary of various categories of tweets around # hemophilia
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 9
Helping parents to teach
their kids about pros and
cons of disease from a very
early age
Making parents understand
and manage the condition
to avoid events such as
kids missing school due to
bleeding disorders, etc.
Guiding patients to have
inventory of medication to
avoid problems during
natural calamities
Taking care of dental issues
along with hemophilia
Awareness
Summary of various categories of tweets around # hemophilia
News/Articles
Tiered pricing of hemophilia
medication
Story of hemophilic patients
who fought the disease
bravely
Article by NHF around why
logging factor infusion is
important for patients of
hemophilia
Help regarding insurance
More on Awareness
Discussion about
alternative therapies like
meditation for pain and
stress relief, exercises,
hypnosis, etc.
Adoption experiences
Appearances of patients in
documentaries and videos
Joining campaigns for
hemophilic patients
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 10
Social essence can be established from Twitter conversations for
hemophilic patients
Living with hemophilia is
costly, painful,
exhausting, and
disheartening, due to
multifaceted limitations
Managing kids with
hemophilia is a
daunting task,
overprotectiveness
causes
psychological stress
and mental
discomfort
Issues related
to diagnosis
and treatment
of hemophilia
due to lack of
awareness
Hemophilic
patients dream
of leading a
normal life
which is
challenging for
them
Significant financial
problems are associated with
managing hemophilia, since
treatment costs are
astronomical and insurance
has cap, as well as in many
cases, it is hard to find
Social stigma
associated with
hemophilia is
demotivating,
e.g. people
stare at bruises
Will there be a
day when a
single shot will
treat
hemophilia for
long?
Keeping stock of
hemophilia drugs,
ordering on time,
maintaining
injection schedule
consumes a lot of
time
I am a
hemophilic
parent, will my
kids also have
hemophilia?
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 11
Activities on Facebook – Conversations among patients of hemophilia
France/US/UK
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 12
Qualitative analysis of patients’ comments on the French Facebook
group “Association Française des Hemophiles” reveals patient
concerns and opportunities
conversations
– Monitored for
August 2011
and September
2011
Total – 160
comments
Total active
members – 391
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 13
Patients’ conversations on hemophilia-related French Facebook group
reveal concerns which are different for different stakeholders. E.g.
paramedics and helpers
1. Many patients complain of incompetence and
lack of awareness about hemophilia in the
medical staff
2. The above leads to mistakes that may
severely affect hemophilic patients, and one
such case was reported in the discussions
3. Hemophilic patients usually tend to be
knowledgeable about the disease and due to
lack of awareness in paramedics/medical staff
about hemophilia, opinion-conflicts may arise
4. One of the major concerns for patients is
unequal geographic distribution of quality
treatment of hemophilia treatment centers, as
well as the consistency in quality of first-aid or
treatment available for hemophilic patients
1. Make trained paramedics available for urgent
help for hemophilic patients
2. Take steps to improve the communication
between patients and paramedic staff, so that
there is a better understanding, and situation
may be managed better. Paramedics should
listen to them.
3. Offer information about good quality hospitals
on the go through web apps, smart phones,
iPad apps, helplines, Google maps, etc.
4. Work with some physicians and make patients
go to them; get the other physicians trained by
expert physicians
5. Build a partnership with physicians and make
them travel across France to train other
physicians
Patient concerns about availability of care Online Campaigns/Engagement Opportunities
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 14
Patients’ conversations on hemophilia-related French Facebook group
reveal concerns which are different for different stakeholders. E.g.
carrier mothers
1. Defective gene carrying mothers feel guilty of
imparting the disease to their children, and
they have substantial reservations about
getting pregnant and having a biological child
2. They experience psychological stress and
mental discomfort thinking about pregnancy,
and this may sometimes lead to decisions
against getting pregnant and considering other
options such as adoption
3. One of the concerns for hemophilic parents or
to-be-parents about their children is high cost
of treatment and lifestyle challenges
associated with raising hemophilic children
1. Spreading awareness about probability of the
children of hemophilic mothers not necessarily
expressing hemophilia
2. Organizing a web-based training tutorial/
program for handling complications during
pregnancy
3. Creating an online campaign spreading
awareness about availability of treatment and
that even if the children have the disease, they
can lead a normal life
4. Creating online discussions and communities
for psychological support and awareness
about hemophilia
Concerns of defective gene carrying mothers Online Campaigns/Engagement Opportunities
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 15
Patients’ conversations on hemophilia-related French Facebook group
reveal concerns which are different for different stakeholders. E.g.
hemophilic children and teachers
1. Hemophilic children may be asked to wear
helmets and bands for avoiding injury during
play which may adversely affect their self
esteem
2. Parents often tend to be over-protective and
children feel suppressed, since they are
prohibited from playing with other children or
participate in outdoor activities
3. The need for over-protection is aggravated
due to lack of trained professionals and their
availability at the time of injury
4. At schools, teachers tend to treat hemophilic
children differently since they wish to avoid
mishaps out of the fear that if something goes
wrong, they may be held responsible and
dragged into legal battles.
5. In general, teachers seem to be unaware of
the requirements of hemophilic children and
take a conservative stance
1. Spreading awareness in parents about
managing preventive care for hemophilic
children and training them for better
communication with children
2. Creating awareness about treating the
hemophilic children with care and same as
others to avoid social stigma
3. Organizing a training program for teachers for
first aid/primary care of hemophilic children if
they are injured
4. Online campaign targeted at schools for
emphasizing need for an emergency response
system from the schools
5. An online webinar for teachers informing and
explaining them about the agreements existing
between schools, hospitals and parents so
that they don’t feel legally threatened
Concerns of hemophilic children Online Campaigns/Engagement Opportunities
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 16
Patients’ conversations on hemophilia-related French Facebook group
reveal concerns which are different for different stakeholders. E.g.
elderly hemophilic patients
1. Elderly hemophilic patients show eagerness to
share their experiences, offer guidance and
tips about managing the disease and lifestyle
2. They emphasize the need to be active and
healthy in spite of over-protectiveness of
parents towards hemophilic kids
3. Specific to France, there are obstacles to
remaining active – many a times, remaining
active and playing sports needs joining
clubs/gymnasiums which needs medical
certification, and that may be difficult to obtain
for hemophilic kids
4. Besides general motivation, elder hemophilic
patients are willing to offer professional
guidance, and tips for managing at the work
place
1. Appoint elderly hemophilic patients as senior
patient advocates and organize webinars and
Twitter chats promoting interaction between
them and encouraging social sharing
2. Enhance the positive brand image by
sponsoring hemophilia related events, thus
establishing trust (Our analysis of English
Facebook group shows that Baxter is actively
engaging patients suffering from hemophilia
and establishing a positive brand image)
3. Corporate sponsorship of sports clubs or
health centers which have instructors or
paramedics trained in treating or first aid of
hemophilia
Concerns of elderly hemophilic patients Online Campaigns/Engagement Opportunities
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 17
Activities on YouTube – Hemophilia patient videos - Content overview and
challenges
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 18
1. Astronomical costs of treatment
2. Difficulty in getting insurance coverage or
policy extension
3. Managing hemophilic kids
a) Frequent complaints of pain and
injury
b) Difficult to hold back from activity and
sports
c) Social stigma in kids due to
accessories and over-protectiveness
4. Leading a normal, worry-free life is
impossible
Hemophilia related patient/caretaker videos on YouTube reveal
challenges faced by them in managing hemophilia
1. Disease-related medical information
2. Knowledge sharing around managing the
disease
3. Physician interview about treatment around
managing hemophilia
4. Expressing emotional issues, social sharing
YouTube videos – Content overview
Challenges mentioned by patients
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 19
Summary and findings from analysis – What are patients thinking? How do they
manage themselves? Unmet needs?
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 20
Conversations of hemophilic patients on leading social networks can be
categorized into three major areas of concern
Frequent injections cause
inconvenience
Time consuming medical
procedures and check ups
Over-protectiveness of
parents towards kids
Substantial efforts in
preventing injuries
Effect of medication doesn’t
last
Keeping inventory, ordering
medicines, maintaining
schedules is a hassle
Lack of awareness among
physicians
Disease aspect Cost/financial aspect Emotional aspect
Unusually high cost of
medication, high insurance
premium
Difficulties in getting
insurance
Insurance payment cap
Logistics cost of preventing
injuries
Opportunity cost (time
investment)
Mobility in travel
Limited recreational options
Psychological pressure of
inheriting disease in
offspring
Frustration, emotional
stress, mental discomfort
by watching hemophilic
kids
Difficulty in starting a
relationship
High expectation of support
from family and society
Lack of technical
knowledge about the
disease
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 21
Categorized examples of the “thoughts” of hemophilia patients around
the three areas: Disease, Cost Burden and Emotional Issues
Frequent
injections cause
inconvenience,
and medical
procedures and
check ups are
time consuming
I get limited time to
do other activities, I
have to be careful
and my options of
recreation are
anyway limited
Isn’t there a drug
that lasts longer,
so that I get
pricked less
frequently, and
don’t spend time
in check-ups?
!
My injections are
running out, I have
to maintain
inventory, keep
stock, order them
in time
I have to maintain a
scheduled of dosage,
plan things in advance
and go to the
pharmacy to buy
medication ! Is there a digital
application using
which I can
create a
schedule, set
reminders and
save time in
organizing?
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 22
Categorized examples of the “thoughts” of hemophilia patients around
the three areas: Disease, Cost Burden and Emotional Issues
My hemophilic
son’s medication
and treatment are
expensive and his
insurance has a
cap
I have limited income
and getting insurance
is challenging? How
do I mange my
finances?
Are there any
cheaper
alternative
therapies? When
will the drugs get
cheaper? Can I
get new
insurance?
!
I am defective
gene carrying
mother, if I get
pregnant, will my
child have
hemophilia? What
are my options?
Should I adopt a
child? What is the
chance that my child
will not have
hemophilia? If he/she
does, can they lead a
normal life? !
Is there a website
or a portal that will
offer this
information
comprehensively?
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 23
Patients of hemophilia have specific ways of managing the disease, i.e.
prevention and treatment. Prevention includes various activities
Preventing Trauma/Injury Strengthening/Exercises Social Sharing
Avoiding dangerous and
physically extensive
outdoor ventures such as
sports, hiking and trekking,
rough terrains, etc.
Avoiding cuts, bruises,
dental bleeds, etc.
Hemophilic children are
made to wear helmets,
bands, other accessories
Muscle strengthening
exercises to enhance
resistance to bleed and
abrasion
Strengthening immune
system and including
supporting nutrients in the
diet
Joining patient discussion,
sharing knowledge and tips,
participating in hemophilia
related events
Organizing special camps
for patients of hemophilia
and hemophilic children
Managing hemophilia before injury
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 24
Patients of hemophilia have specific ways of managing the disease i.e.
prevention and treatment. Treatment too, includes various activities
First aid – after injury Chronic management Pain management
1. In case of bleeds, they use
first aid, resting, bandage
application, etc.
2. Access professional help
and rush to a hemophilia
treatment center nearby
3. Immediately after a bleed,
they consume cold yogurts
or cold drinks to minimize
the blood loss until aid is
received
1. Based on availability of IV
port, factor replacements
are injected on demand at
homes, or injected
prophylactically at interval
prefixed by their healthcare
professional
2. Recombinant factor
consumption to manage
bleeding
3. Administering
antifibrinolytic (e.g. Solulin)
drugs, desmopressin nasal
sprays, etc.
1. Alternative therapies for
preventing bleedings such
as consuming flax seed oil
(mechanism unknown),
etc.
2. Taking pain killers and
NSAIDs, but there’s
confusion around bleeding
related side effects of
these drugs
3. Managing pain due to
bleeding using hypnosis,
counseling, etc.
Chronic management and after injury
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 25
Various unmet needs can be identified from social media conversations
of hemophilic patients such as needs relating to route of administration,
drug efficacy, and cost of treatment
Unmet
Needs
ROA –
Injections
Drug
efficacy
Cost of
treatment
1. Frequent injections cause inconvenience due to high frequency,
and present logistical challenges
2. Are a costly and “difficult-to-sustain” option
3. May have side effects such as bruises, infection and pain at
injection site
4. Difficult to administer to kids
5. Oral medication would be great
1. Effect of the drugs doesn’t last long
2. Frequency of administration is high
3. High frequency leads to higher costs, lower compliance and
inconvenience
4. Causes psychological stress while administering injections
frequently to kids which induces pain in them
5. Need longer lasting drugs
1. Treatment is expensive and often consumes substantial financial
resources since insurance coverage is difficult to obtain
2. Insurance coverage often has a cap and this leads to fear of
exhausting aid, and mental discomfort
3. Consumes time and leaves lesser options for recreation, earning,
and quality of life suffers
4. Need cheaper drugs
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 26
Lack of
emergency
response system
Difficulty in
locating a HTC in
case of
emergency
Lack of
awareness
Lack of proper
awareness about
the various
aspects of
disease,
specifically
managing kids with
hemophilia
Various unmet needs can be identified from social media conversations
of hemophilic patients such as needs relating to hemophilia treatment
infrastructure
Lack of Professional Help
Lack of immediate
professional help, lack of
trained medical
professionals with detailed
knowledge of hemophilia
disease and treatment
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 27
Online and offline opportunities for engaging hemophilia patient
communities
Paramedics/
Healthcare
Professionals
Parents of
Hemophilic
children/
Children with
hemophilia
Hemophilic
patients –
Digital
engagement
Digital Engagement
• Developing an iPad
application that keeps
schedule of injections, helps
in optimizing inventory, and
ordering medications
• Organizing a Video/Webinar
for parents of hemophilic
children on how to manage
them
• Creating a Google Maps
based application that comes
handy in locating Hemophilia
Treatment Centers in case of
emergency (PharmARC can
develop this application.)
• Encouraging online
discussions and patient
participation using social
media initiatives, promotions,
and awareness campaigns
Workshops / Sponsorship
1. Sponsoring, training
paramedics for treating
patients of hemophilia
Event Sponsorship
1. Sponsoring events such as
knowledge sharing sessions
and camps specially for
hemophilic children
2. Organizing workshops
generating awareness to
manage emergency,
hemophilic kids and
burnouts of caregivers
3. Sponsor some hemophilic
families to attend annual
events such as National
Hemophilia summit and get
them to blog
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 28
Social media monitoring and analysis also reveals activities of
companies and patient sentiments around them
Baxter seems to be quiet popular
among Hemophilic patient community
and foundations
This may be due to their sponsorship
for various events for patient
community like camps, hemophilia
walks, workshops, etc.
Participating and actively engaging
hemophilia patient community online
and offline enhances the bonding
between the brand and patients,
builds trust and helps in establishing
a positive brand image
Hemophilic patients mention Baxter in
their conversations
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 29
Gaining more insights from patient conversations will need long-term
and continuous monitoring of various social networks around
hemophilia, for generating qualitative and quantitative analysis
– Continuous monitoring of Twitter feeds around hemophilia related hashtags such as
#hemophilia
– Monitoring global Hemophilia related groups on Facebook
YouTube
– Monitoring patient generated videos for content and comments
Blogs and Forums
– Monitoring leading blogs on hemophilia for content and patient responses, monitoring
discussion topics in forums
Longitudinal tracking
– Identifying Key Social Advocates (KSAs) from patient communities, tracking their
activities online over a long period of time
News
– Research and publication
Updates every 2 months
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 30
© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved.
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USA
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For further information on this document, please contact:
Tanmay Saraykar
Manager, Social Media Analytics
+91 7829909766
tanmay.saraykar@pharmarc.com