Hemophilia - PharmARC Social Media Analytics Presentation

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 www.pharmarc.com

Patients’ conversations around hemophilia occur on leading social
networking platforms such as Twitter and Facebook

Conversations Areas of analysis

• Twitter chats overview – Chats with #hemophilia
Twitter • Insights from Twitter – Patient conversations, categories of
1
comments, examples, and social essence

• French group/English groups – Patient concerns/engagement
opportunities
2 Facebook
• Availability and quality of care
• Hemophilic parents/mothers, children, elderly patients

• Hemophilia-related patient videos on YouTube
3 YouTube • Content overview
• Patients’ challenges

• What are patients thinking?
Summary and • How do they manage themselves?
4
findings
• Unmet needs and opportunities

© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 2

Activities on Twitter – Conversations among patients of hemophilia US/UK


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


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

Pattern of daily tweets using #hemophilia, hemophilia and
haemophilia (Total # 566 tweets)
80 76

70
60 62 60
60

50 44
42
40
33 31
30 25
21 23 22
20 17
14 13
10
10 6 4
2 1
0

2-Sep-11

6-Sep-11
1-Sep-11

3-Sep-11

4-Sep-11

5-Sep-11

7-Sep-11

8-Sep-11
21-Aug-11

25-Aug-11

29-Aug-11
20-Aug-11

22-Aug-11

23-Aug-11

24-Aug-11

26-Aug-11

27-Aug-11

28-Aug-11

30-Aug-11

31-Aug-11


Patient tweets around hemophilia (using #hemophilia) can be
categorized into various buckets such as awareness, events, news,
social sharing, etc.
Hemophilia Disease aspect
Patient/Social
Fundraising
Junk Support
7% 1. Hemophilia
20% 5% Hemophila
disease, Patient/Social Support
Research and – (27)
Treatment 2. Fundraising – (39)
7% 3. Hemophilia disease,
Research and
Treatment – (40)
4. Expression/Empathy/
Expression/
Empathy/Social
Social Sharing – (42)
Sharing 5. Knowledge/Tips
7% sharing/Questions –
(46)
Significant 6. Hemophilia Related
News/Related Events – (51)
Knowledge/Tips
Articles sharing/Que. 7. Awareness – (100)
19% 8% 8. Significant News/
Related Articles –
(104)
9. Junk – (113)
Hemophilia
Related Events
9%
Awareness
18%


Summary of various categories of tweets around # hemophilia

Patient/Social Support Fundraising Disease Research Treatment

 Mutual interaction among  Fund raising programs  Need for diagnostic
the patients to share their techniques which reduce
experiences for managing  Hemophilia walk recurrent check-ups to
the disease condition  Hemophilia manage the disease
Foundation golf tour
 Depression and mood  Entertainment houses  Difficulties in managing older
change can be restricted by and production hemophilic patients’
social involvement only houses’ performance conditions
for funds
 Being a hemophilic there is  Halloween fundraiser  Professionals need to be
nothing for which one carnival updated with the latest
should feel humiliated  Beauty for charity for developments in the medical
hemophilic patients aspects of this disease
 Helps in fighting the
disease with motivation  Various shopping  Need for research in context
complexes offering their to the use of pain killers
 Motivational boost up for 10% sale to be donated to which can allow blood to clot
caregivers and patients hemophilic foundations simultaneously



Expression/Empathy/Sharing Knowledge/Tips/Questions Hemophilia Related Events

 Guidelines for  Tips for living healthy with  Adventurous trips by
school/college going hemophilia, such as various teams for support of
hemophilic patients Exercising tips, Yoga, Hemophilic foundations
Nutritional tips, etc.
 Stay connected due to  Organizing hemophilic
impact of hemophilia on  Expressing opinions - Use dinner (CME) for healthcare
families of port for infusion have professionals
great risk of infection
 Are they staring at my  Organizing annual NHF
hemophilic bruises, at my  Application of ice along with meeting, conferences,
needle marks – Getting infusion helps a lot symposium, social media
used to stares roundtable conferences
 Pregnancy related
 Will my son grow up to be guidelines – Pushing  Workshop in association
the only sibling? stages of labor, Birth plans with pharmaceutical firms
for baby who may have
hemophilia, medication, etc.



Awareness More on Awareness News/Articles

 Helping parents to teach  Discussion about  Tiered pricing of hemophilia
their kids about pros and alternative therapies like medication
cons of disease from a very meditation for pain and
early age stress relief, exercises,  Story of hemophilic patients
hypnosis, etc. who fought the disease
 Making parents understand bravely
and manage the condition  Adoption experiences
to avoid events such as  Article by NHF around why
kids missing school due to  Appearances of patients in logging factor infusion is
bleeding disorders, etc. documentaries and videos important for patients of
hemophilia
 Guiding patients to have  Joining campaigns for
inventory of medication to hemophilic patients  Help regarding insurance
avoid problems during
natural calamities

 Taking care of dental issues
along with hemophilia


Social essence can be established from Twitter conversations for
hemophilic patients

Managing kids with Issues related Keeping stock of
hemophilia is a to diagnosis hemophilia drugs,
daunting task, and treatment ordering on time,
Living with hemophilia is
overprotectiveness of hemophilia maintaining
costly, painful,
causes due to lack of injection schedule
exhausting, and
psychological stress awareness consumes a lot of
disheartening, due to
and mental time
multifaceted limitations
discomfort
Social stigma
Hemophilic
associated with
patients dream
hemophilia is
of leading a
demotivating,
normal life
e.g. people
which is Significant financial stare at bruises
challenging for problems are associated with
them managing hemophilia, since
treatment costs are
Will there be a astronomical and insurance I am a
day when a has cap, as well as in many hemophilic
single shot will cases, it is hard to find parent, will my
treat kids also have
hemophilia for hemophilia?
long?


Activities on Facebook – Conversations among patients of hemophilia
France/US/UK


Qualitative analysis of patients’ comments on the French Facebook
group “Association Française des Hemophiles” reveals patient
concerns and opportunities

Facebook
conversations
– Monitored for
August 2011
and September
2011

Total – 160
comments

Total active
members – 391


Patients’ conversations on hemophilia-related French Facebook group
reveal concerns which are different for different stakeholders. E.g.
paramedics and helpers
Patient concerns about availability of care Online Campaigns/Engagement Opportunities

1. Many patients complain of incompetence and 1. Make trained paramedics available for urgent
lack of awareness about hemophilia in the help for hemophilic patients
medical staff
2. Take steps to improve the communication
2. The above leads to mistakes that may between patients and paramedic staff, so that
severely affect hemophilic patients, and one there is a better understanding, and situation
such case was reported in the discussions may be managed better. Paramedics should
listen to them.
3. Hemophilic patients usually tend to be
knowledgeable about the disease and due to 3. Offer information about good quality hospitals
lack of awareness in paramedics/medical staff on the go through web apps, smart phones,
about hemophilia, opinion-conflicts may arise iPad apps, helplines, Google maps, etc.

4. One of the major concerns for patients is 4. Work with some physicians and make patients
unequal geographic distribution of quality go to them; get the other physicians trained by
treatment of hemophilia treatment centers, as expert physicians
well as the consistency in quality of first-aid or
treatment available for hemophilic patients 5. Build a partnership with physicians and make
them travel across France to train other
physicians


carrier mothers
Concerns of defective gene carrying mothers Online Campaigns/Engagement Opportunities

1. Defective gene carrying mothers feel guilty of 1. Spreading awareness about probability of the
imparting the disease to their children, and children of hemophilic mothers not necessarily
they have substantial reservations about expressing hemophilia
getting pregnant and having a biological child
2. Organizing a web-based training tutorial/
2. They experience psychological stress and program for handling complications during
mental discomfort thinking about pregnancy, pregnancy
and this may sometimes lead to decisions
against getting pregnant and considering other 3. Creating an online campaign spreading
options such as adoption awareness about availability of treatment and
that even if the children have the disease, they
3. One of the concerns for hemophilic parents or can lead a normal life
to-be-parents about their children is high cost
of treatment and lifestyle challenges 4. Creating online discussions and communities
associated with raising hemophilic children for psychological support and awareness
about hemophilia


hemophilic children and teachers
Concerns of hemophilic children Online Campaigns/Engagement Opportunities

1. Hemophilic children may be asked to wear 1. Spreading awareness in parents about
helmets and bands for avoiding injury during managing preventive care for hemophilic
play which may adversely affect their self children and training them for better
esteem communication with children

2. Parents often tend to be over-protective and 2. Creating awareness about treating the
children feel suppressed, since they are hemophilic children with care and same as
prohibited from playing with other children or others to avoid social stigma
participate in outdoor activities
3. Organizing a training program for teachers for
3. The need for over-protection is aggravated first aid/primary care of hemophilic children if
due to lack of trained professionals and their they are injured
availability at the time of injury
4. Online campaign targeted at schools for
4. At schools, teachers tend to treat hemophilic emphasizing need for an emergency response
children differently since they wish to avoid system from the schools
mishaps out of the fear that if something goes
wrong, they may be held responsible and 5. An online webinar for teachers informing and
dragged into legal battles. explaining them about the agreements existing
between schools, hospitals and parents so
5. In general, teachers seem to be unaware of that they don’t feel legally threatened
the requirements of hemophilic children and
take a conservative stance

elderly hemophilic patients
Concerns of elderly hemophilic patients Online Campaigns/Engagement Opportunities

1. Elderly hemophilic patients show eagerness to 1. Appoint elderly hemophilic patients as senior
share their experiences, offer guidance and patient advocates and organize webinars and
tips about managing the disease and lifestyle Twitter chats promoting interaction between
them and encouraging social sharing
2. They emphasize the need to be active and
healthy in spite of over-protectiveness of 2. Enhance the positive brand image by
parents towards hemophilic kids sponsoring hemophilia related events, thus
establishing trust (Our analysis of English
3. Specific to France, there are obstacles to Facebook group shows that Baxter is actively
remaining active – many a times, remaining engaging patients suffering from hemophilia
active and playing sports needs joining and establishing a positive brand image)
clubs/gymnasiums which needs medical
certification, and that may be difficult to obtain 3. Corporate sponsorship of sports clubs or
for hemophilic kids health centers which have instructors or
paramedics trained in treating or first aid of
4. Besides general motivation, elder hemophilic hemophilia
patients are willing to offer professional
guidance, and tips for managing at the work
place


Activities on YouTube – Hemophilia patient videos - Content overview and
challenges


Hemophilia related patient/caretaker videos on YouTube reveal
challenges faced by them in managing hemophilia

YouTube videos – Content overview

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

Challenges mentioned by patients

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


Summary and findings from analysis – What are patients thinking? How do they
manage themselves? Unmet needs?


Conversations of hemophilic patients on leading social networks can be
categorized into three major areas of concern

Disease aspect Cost/financial aspect Emotional aspect

 Frequent injections cause  Unusually high cost of  Limited recreational options
inconvenience medication, high insurance  Psychological pressure of
 Time consuming medical premium inheriting disease in
procedures and check ups  Difficulties in getting offspring
 Over-protectiveness of insurance  Frustration, emotional
parents towards kids  Insurance payment cap stress, mental discomfort
 Substantial efforts in  Logistics cost of preventing by watching hemophilic
preventing injuries injuries kids
 Effect of medication doesn’t  Opportunity cost (time  Difficulty in starting a
last investment) relationship
 Keeping inventory, ordering  Mobility in travel  High expectation of support
medicines, maintaining from family and society
schedules is a hassle  Lack of technical
 Lack of awareness among knowledge about the
physicians disease


Categorized examples of the “thoughts” of hemophilia patients around
the three areas: Disease, Cost Burden and Emotional Issues

Frequent I get limited time to Isn’t there a drug
injections cause do other activities, I that lasts longer,

!
inconvenience, have to be careful so that I get
and medical and my options of pricked less
procedures and recreation are frequently, and
check ups are anyway limited don’t spend time
time consuming in check-ups?

Is there a digital
My injections are I have to maintain a application using
running out, I have scheduled of dosage, which I can

!
to maintain plan things in advance create a
inventory, keep and go to the schedule, set
stock, order them pharmacy to buy reminders and
in time medication save time in
organizing?


Categorized examples of the “thoughts” of hemophilia patients around
the three areas: Disease, Cost Burden and Emotional Issues

Are there any
My hemophilic I have limited income cheaper
son’s medication and getting insurance

!
alternative
and treatment are is challenging? How therapies? When
expensive and his do I mange my will the drugs get
insurance has a finances? cheaper? Can I
cap get new
insurance?

I am defective Should I adopt a
gene carrying child? What is the Is there a website
chance that my child

!
mother, if I get or a portal that will
pregnant, will my will not have offer this
child have hemophilia? If he/she information
hemophilia? What does, can they lead a comprehensively?
are my options? normal life?


Patients of hemophilia have specific ways of managing the disease, i.e.
prevention and treatment. Prevention includes various activities

Managing hemophilia before injury

Preventing Trauma/Injury Strengthening/Exercises Social Sharing

 Avoiding dangerous and  Muscle strengthening  Joining patient discussion,
physically extensive exercises to enhance sharing knowledge and tips,
outdoor ventures such as resistance to bleed and participating in hemophilia
sports, hiking and trekking, abrasion related events
rough terrains, etc.  Strengthening immune  Organizing special camps
 Avoiding cuts, bruises, system and including for patients of hemophilia
dental bleeds, etc. supporting nutrients in the and hemophilic children
 Hemophilic children are diet

made to wear helmets,
bands, other accessories


Patients of hemophilia have specific ways of managing the disease i.e.
prevention and treatment. Treatment too, includes various activities

Chronic management and after injury

First aid – after injury Chronic management Pain management

1. In case of bleeds, they use 1. Based on availability of IV 1. Alternative therapies for
first aid, resting, bandage port, factor replacements preventing bleedings such
application, etc. are injected on demand at as consuming flax seed oil
homes, or injected (mechanism unknown),
2. Access professional help prophylactically at interval etc.
and rush to a hemophilia prefixed by their healthcare
treatment center nearby professional 2. Taking pain killers and
NSAIDs, but there’s
3. Immediately after a bleed, 2. Recombinant factor confusion around bleeding
they consume cold yogurts consumption to manage related side effects of
or cold drinks to minimize bleeding these drugs
the blood loss until aid is
received 3. Administering 3. Managing pain due to
antifibrinolytic (e.g. Solulin) bleeding using hypnosis,
drugs, desmopressin nasal counseling, etc.
sprays, etc.

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

1. Frequent injections cause inconvenience due to high frequency,
and present logistical challenges
2. Are a costly and “difficult-to-sustain” option
ROA – 3. May have side effects such as bruises, infection and pain at
Injections 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
Drug 3. High frequency leads to higher costs, lower compliance and
Unmet inconvenience
Needs efficacy
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
Cost of 2. Insurance coverage often has a cap and this leads to fear of
treatment exhausting aid, and mental discomfort
3. Consumes time and leaves lesser options for recreation, earning,
and quality of life suffers
4. Need cheaper drugs

Various unmet needs can be identified from social media conversations
of hemophilic patients such as needs relating to hemophilia treatment
infrastructure

Lack of
awareness
Lack of proper
Lack of Professional Help awareness about
Lack of immediate the various
professional help, lack of aspects of
disease,
trained medical
specifically
professionals with detailed managing kids with
knowledge of hemophilia hemophilia
disease and treatment

Lack of
emergency
response system
Difficulty in
locating a HTC in
case of
emergency


Online and offline opportunities for engaging hemophilia patient
communities

Workshops / Sponsorship Digital Engagement

1. Sponsoring, training Paramedics/ • Developing an iPad
paramedics for treating Healthcare application that keeps
patients of hemophilia Professionals schedule of injections, helps
in optimizing inventory, and
ordering medications
Event Sponsorship
• Organizing a Video/Webinar
1. Sponsoring events such as for parents of hemophilic
knowledge sharing sessions children on how to manage
and camps specially for Hemophilic them
hemophilic children patients –
Digital • Creating a Google Maps
2. Organizing workshops engagement based application that comes
generating awareness to handy in locating Hemophilia
manage emergency, Treatment Centers in case of
hemophilic kids and emergency (PharmARC can
burnouts of caregivers develop this application.)
Parents of
Hemophilic
3. Sponsor some hemophilic • Encouraging online
children/
families to attend annual discussions and patient
Children with
events such as National participation using social
hemophilia
Hemophilia summit and get media initiatives, promotions,
them to blog and awareness campaigns


Social media monitoring and analysis also reveals activities of
companies and patient sentiments around them

Hemophilic patients mention Baxter in
their conversations

 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


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

 Twitter
– Continuous monitoring of Twitter feeds around hemophilia related hashtags such as
#hemophilia
 Facebook
– 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


For further information on this document, please contact:

Tanmay Saraykar
Manager, Social Media Analytics
+91 7829909766
tanmay.saraykar@pharmarc.com

Corporate Headquarters Europe USA
PharmARC Analytic Solutions Pvt. Ltd. PharmARC Consulting Services GmbH PharmARC Inc.
Mercury 2B Block, 6th Floor Blumenrain 16 100 Overlook Center
Prestige Technology Park 4051 Basel 2nd Floor, Princeton, NJ 08540
Sarjapur – Marathahalli Outer Ring Road Switzerland USA
Bangalore 560 103, India

T +91 (80) 4123 8900 T +41 (61) 261 8900 T +1 (609) 450 1880
F +91 (80) 4123 8999 F +41 (61) 261 8901 F +1 (609) 895 2666

©© PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved.
PharmARC Analytic Solutions Pvt. Ltd., 2011. All Rights Reserved. Slide 30

Hemophilia - PharmARC Social Media Analytics Presentation

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