Hemophilia - PharmARC Social Media Analytics Presentation

www.pharmarc.com

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

Twitter

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


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

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)


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


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


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



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


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


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?


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

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




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




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




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


Activities on YouTube – Hemophilia patient videos - Content overview and

challenges


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


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

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


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?


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?


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


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


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


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


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


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


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


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

Corporate Headquarters

PharmARC Analytic Solutions Pvt. Ltd.

Mercury 2B Block, 6th Floor

Prestige Technology Park

Sarjapur – Marathahalli Outer Ring Road

Bangalore 560 103, India

T +91 (80) 4123 8900

F +91 (80) 4123 8999

Europe

PharmARC Consulting Services GmbH

Blumenrain 16

4051 Basel

Switzerland

T +41 (61) 261 8900

F +41 (61) 261 8901

USA

PharmARC Inc.

100 Overlook Center

2nd Floor, Princeton, NJ 08540

USA

T +1 (609) 450 1880

F +1 (609) 895 2666

For further information on this document, please contact:

Tanmay Saraykar

Manager, Social Media Analytics

+91 7829909766

[email protected]

mailto:[email protected]

Hemophilia - PharmARC Social Media Analytics Presentation

Health & Medicine

Transcript of Hemophilia - PharmARC Social Media Analytics Presentation