Online conversation tracking Intermediary results: Specific … · 2016. 1. 20. · Background & Objectives Background • On social media, there are an increasing amount of conversations

05/02/2010

By Carl Vandeloo, Senior Research Consultant, InSites Consulting

Steven Van Belleghem, Managing Partner, InSites Consulting

Annelies Verhaeghe, ForwaR&D lab, InSites Consulting

For: Keppra brand team

Online conversation tracking

Intermediary results: Specific questions

Epilepsy

Background & Objectives

Background

• On social media, there are an increasing amount of conversations about health

and diseases.

• During the last two years, UCB and InSites Consulting have invested quite a lot in

the tracking of online observations. InSites Consulting & UCB have set-up first

projects for Neupro, Cimzia & Keppra.

• In 2010 (& later) UCB wants to set-up conversation trackings for its key products

(starting with Neupro, Cimzia, Vimpat and others may follow).

Objectives conversation tracking

1. Increase the effectiveness of the brand plans

2. Get insights directly from patients during spontanuous discussions they have

online

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Methodology

Conversation tracking is different from other methodologies on a number of

aspects:

During the project, we strongly encourage feedback from the brand and insight

teams

• The more background we have about challenges and issues in the marketing plans, the

better we can tailor the analysis.

• A market insights needs to be recognizable and relevant for your industry and company.

Therefore we ask help from the brand team in determining topics for in-depth analysis.

3

Traditional research Social media netnography

Asking/ interviewing Listening: consumers put topics on the agenda

Online behaviour (clickrates, keyword analysis)

User-generated-content

Profile: Country, sample size, profile Limited information on profile

Independent People influence other people

Post-hoc Heat of the moment

Strict distinction between quantitative and qualitative analysis

Fusion of analysis techniques. Analysis is done with text analytics

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PROFILING

Country of originth

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UK:18%

61%

4%

7%

The majority of the online conversations comes from US

N = 854

Other countries: 3%

Indicated in grey

Q: From which countries are the online conversations?

Note: only conversations where country information is available

Caregivers vs patientsth

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N = 4684

About ¾ of the conversations comes from patients

Q: Who has posted the online conversations?

Note: only conversations where information on profile is available

73%

27%

Patients Caregivers

BOTTOM-UP SEGMENTATION

EPILEPSY

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42.469 online conversations

about EpilepsyTime scope June to December 2009

Methodology

• Through pattern detection and deliberate key

word searching different clusters of words in the

buzz are found that refer to different themes

• For each theme, we determine the size of the

cluster and the sentiment of the cluster

Interpretation

• Different quadrants are determined based on

quartiles in volume and sentimeter (Q1 – Q2 and

Q3 – Q4).

• Meaning of different quadrants

• 1: Act: themes in the market that are often

mentioned with a negative sentiment

• 2: Develop: themes in the market that are often

mentioned with a positive sentiment

• 3: Threats: themes with negative sentiment that

are currently not often mentioned but that are

explicitely negative for certain market niches

• 4: Potential: themes with mixed sentiment that are

often mentioned. In the future, we can try to

influence the sentiment of those themes positively

VolumeS

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Bottom-up segmentation

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http://upload.wikimedia.org/wikipedia/commons/9/9a/Toolbox.jpg

Main themes in online conversations about

Epilepsy11

Volume

Sen

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Biggest themes are related to the different types of epilepsy or the person who suffers from epilepsy. Medication and brand names are also frequently discussed online.

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N = 42469

family

seizures

stakeholders

symptoms

medication brands

medication

epilepsy

diagnosis

types epilepsy

social impactchildren

administration

medication

Success

treatment

(no) control

surgery

side effects

budget

diet

generic medication

Frequency and

duration seizures

Seizure triggers

Medication

unloyalty

Treatment

Specific triggers

knowledgeMolecules

Polytherapy

Alternative

treatment

Other treatments


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What are the types of epilepsy

discussed online?

DIFFERENT TYPES OF EPILEPSY

Buzz and sentiment on epilepsy types

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Volume

Sen

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Petit mal

(absence)

Myoclonic

Tonic

Complex

partialClonic

Nocturnal Temporal Lobe

Simple

partial

AtonicTonic Clonic

Less severe types of Epilepsy (e.g. Petit mals) are discussed with a more positive sentiment. Tonic Clonic seizures can be considered most negative. A very high buzz with a very low sentiment.

SYMPTOMSEPILEPSY

Share symptoms in total amount of conversationsth

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One fifth of conversatios is about symptoms of epilepsy.

Q: To what extent do people mention symptoms in the online conversations?

Total sample - N=42469

Symptoms

20%

N = 8367

Total sample

100%

N = 42469

Prevalence of different symptomsth

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Q: What symptoms are most often mentioned in online conversations?

Most discussions on Epilepsy are about sleep issues and stress. Headaches is the most common pain

type observed.

21%

15%

9%

9%

7%

7%

6%

6%

6%

6%

5%

4%

4%

4%

3%

3%

3%

1%

sleep issues and fatigue

stress and anxiety

emotional and mood

dizziness

pain

other psychological

other

headache

memory issues

symptoms

cardiovascular

confusion

weight issues

muscles

vision

respiratory

gastro

tumor

N = 8367 (conversations on symptoms)Items in grey will be discussed in detail on next slides

Sleep issues and fatigue?th

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21%

18%

8%

7%

3%

3%

2%

2%

medication

tired

insomnia

sleepy

lack of sleep as seizure trigger

nocturnal seizures

sleep deprivation (often

as preparation for EEG)

hours of sleep

Sleep issues are often linked to side

effects of anti epileptic drugs.

Epilepsy is more associated with sedation

than with insomnia

A lack of sleep can be a seizure trigger.

That‟s why sleep deprivation is often

required before conducting a EEG, as a help

for the diagnosis.

Sleep issues and fatigue are most

frequently discussed in combination with

respiratory problems, stress and muscle

problems.

People with Nocturnal, Myoclonic and Tonic

seizures experience more sleep issues than

other epileptic patients.

Memory issues?th

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Memory issues linked with epilepsy are

most often about the short term

memory. Discussions about the long

term memory are rare.

After a surgery, some people

experience memory issues too.

A (slightly) higher association with

memory problems for generalized clonic

epilepsy and temporal lobe epilepsy.

25%

10%

7%

1%

medication

short term memory

surgery

long-term

Pain? th

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Back pain: 3%

Stomach: 2%

Tongue: 2%

Shoulder: 1%

Muscles: 1%

Leg: 1%

Hands: 1%

Eye: 1%

Bone tissue: 1%

Ankle: 1%

Apart from

headaches, there

is no outspoken

association

between

epilepsy and

pain on specific

body parts

Generalized clonic

patients discuss

pain (slightly)

more.

N = 573 (conversations on pain)

BRANDSCAPE

EPILEPSY

Share brands in total amount of conversationsth

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Brands for epilepsy treatment are mentioned in about 14% of online conversations.

Q: To what extent do people mention brands in the online conversations about pharmaceutical treatment?

Total sample - N=42469

Brands

14%

N = 5836

30%

N = 12754

Pharmaceutical treatment

Total sample

100%

N = 42469

2% (832 conversations)

are about generic

products


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When does a AED work for

patients?

What is a working medicine?th

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Medication works in the eyes of patients when it gives seizure control, or when it reduces the number of seizures and does not have too much side effects.

As such: working medication consists of an imaginary ratio:

Q: What is a working medicine for patients?

Effectiveness =

Seizure control

Number and gravity side effects

I have been taking Lamictal for two years and the

side effects are dizziness, anxiety and weight gain

but it works

Reasons to switch drugs

I have been a guinea-pig testing different drugs

none of which helped.

Q: What are reasons to switch drugs?

The drug does not

help in epilepsy

control

Too strong side

effects

AND/OR

He has had so many side effects from everything

i'm curious because I'm also hoping to find

something that works for me.


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What is buzz and sentiment

for different anti epileptic

drugs?

Methodology

• Through pattern detection and deliberate key

word searching different clusters of words in the

buzz are found that refer to different brands

• For each brand, we determine the size of the

cluster and the sentiment of the cluster

Interpretation

• Different quadrants are determined based on

quartiles in volume and sentimeter (Q1 – Q2 and

Q3 – Q4).

• Meaning of different quadrants

• 1: Act: brands in the market that are often

mentioned with a negative sentiment

• 2: Winners: brands in the market that are often

mentioned with a positive sentiment

• 3: Low potential: brands with negative sentiment

that are currently not often mentioned but that are

explicitely negative for certain market niches

• 4: Potential: brands with mixed sentiment that are

often mentioned

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Brand, sentiment and volume of AEDs

explanation26

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Brand, sentiment and volume of AEDs

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Volume

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N = 5836

Keppra

Lamictal

Topamax

Depakote

Trileptal

Vimpat

Dilantin

Lamotrigine

Zonegran

Epilim

Diastat

LyricaKlonopin

Valium

Zarontin

ZoloftFelbatol

Mysoline

Diamox

Epanutin

Tranxene

Discussions about Vimpat are very positive. Keppra is discussed most online.

Share of voiceBrands for treatment of Epilepsy

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Keppra and Lamictal are by far the brands with the biggest amount of conversations followed by Topamax, Depakote and Trileptal. The number of conversations on Vimpat is also increasing compared to last year.

Q: What is the share of voice for the different treatments for epilepsy?

Total sampleN = 42469

Pharmaceutical treatment N = 12754

About brandsN = 5836

35%30%

11%9%9%

7%6%

5%4%4%

3%2%2%1%1%1%1%0%0%0%0%0%

KeppraLamictalTopamaxDepakote

TrileptalVimpat

DilantinLamotrigine

Zonegranepilim

DiastatLyrica

KlonopinValium

ZarontinZoloft

FelbatolMysoline

DiamoxEpanutinTranxene

Pregabalin

Epilepsy brands – N = 5836

= component, discussed as brand

Share of voiceEvolution of number of conversations about the top brands

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The number of conversations about Keppra and Vimpat decreased over the last half year


0,00%

1,00%

2,00%

3,00%

4,00%

5,00%

6,00%

7,00%

8,00%

9,00%

10,00%

June July August September October November

Keppra 5,74% 4,73% 5,81% 4,92% 4,49% 3,45%

Lamictal 4,90% 4,33% 5,02% 3,91% 3,54% 3,40%

Topamax 2,23% 1,58% 1,29% 1,45% 0,86% 1,57%

Depakote 0,95% 1,10% 1,47% 1,76% 1,72% 0,83%

Trileptal 1,96% 1,47% 1,41% 1,45% 0,77% 0,61%

Vimpat 1,61% 1,72% 1,01% 0,86% 0,41% 0,31%




0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

SentimeterBrands for treatment of Epilepsy (top 10 brands with most buzz)

30

Q: To what extent are people positive about the different brands based on sentiment?Filter: only calculated on conversations that only contain 1 brand in order to obtain reliable results

Comparison with sentiment across brands vs top 10

Significantly higher than average

No significant difference with average

Significantly lower than average

Sentiment about Depakote is significant more positive in comparison with other brands. Comparing the current results with the results of last year (different calculation method), we observe that sentiment on Keppra decreased relatively compared to other brands.

N = 281

Vimpat

0,38

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 156

Epilim

0,33

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 221

Trileptal

0,28

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 1037

Lamictal

0,25

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 341

Topamax

0,25

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 138

Lamotrigine

0,23

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 306

0,41

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 1341

Keppra

0,21

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 129

Diastat

0,19

Depakote

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 192

Dilantin

0,14

Average 0,27

SentimeterEvolution of sentiment about Keppra and Vimpat

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Sentiment on Keppra remained stable over the last 6 months. Positivism on Depakote increased steeply whereas sentiment on Vimpat decreased over time.


Conversations about 1 brand only taken into

account

-0,20

-0,10

0,00

0,10

0,20

0,30

0,40

0,50

0,60

0,70

June-July August-September October-December

Keppra 0,2 0,22 0,22

Vimpat 0,5 0,34 -0,06

Depakote 0,35 0,21 0,68

The drop in sentiment for Vimpat is caused by people experiencing side effects from Vimpat that they did not expect from the beginning. (especially sedation and dizziness).

Over the last period, Dekapote was discussed very positively due to a specific success story with several positive reactions.

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32What did we learn so far?

Keppra is often discussed online, with a mixed

sentiment.1

Buzz and sentiment

Outtakes

Discussions on Vimpat are relatively positive. The

number of discussions on Vimpat clearly increased

compared to last year. 2

Depakote is the brand with best emotionality. This

can be explained by its good effectiveness with

relatively limited side effects3


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Do people discuss multiple

drugs together?




Consideration setBrands for treatment of Epilepsy

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In 24% of the branded conversations, patients and caregivers discuss multiple brands.

Q: To what extent are brands mentioned together in one post?

The co-occurance of brands might be an indication of the customer consideration set

76%

19%

3%

1%

0%

0%

0%

0%

1

2

3

4

5

6

7

8

Number of brands per conversation Single conversations per brand

83%

82%

68%

67%

66%

59%

56%

55%

55%

52%

51%

42%

39%

37%

34%

Diastat

Valium

Vimpat

epilim

Keppra

Lamictal

Depakote

Dilantin

Topamax

Klonopin

Lamotrigine

Trileptal

Zarontin

Lyrica

Zonegran

Filter: only brands with at least 50

conversations are included

Ad hoc!

Consideration setBrands for treatment of Epilepsy (top 20 common combinations)

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Q: Which brands do patients/caregivers name together?

5%

2%

2%

2%

2%

2%

2%

2%

2%

1%

1%

1%

1%

1%

1%

1%

1%

1%

1%

1%

Keppra and Lamictal

Trileptal and Lamictal

Keppra and Trileptal

Keppra and Depakote

Lamictal and Topamax

Keppra and Topamax

Topamax and Trileptal

Lamictal and Lamotrigine

Depakote and Lamictal

Lamictal and Zonegran

Keppra and Dilantin

Keppra and Zonegran

Dilantin and Lamictal

Depakote and Topamax

Keppra and Vimpat

Vimpat and Lamictal

Vimpat and Trileptal

Keppra and Epilim

Depakote and Trileptal

Vimpat and Topamax

Top 20 combinations mentioned online




I take Keppra and Vimpat and

have had no issues with

those

The combination Keppra-Vimpat

often refers to people weaning off

Keppra for Vimpat

My doctor put me on Vimpat

twice a day and tried to

wean me off of Keppra and I

started having more

seizures. …she put me back

on Keppra

Good news!!! I have been

taking Vimpat since June

and will be off Keppra by

next Thursday.

And in some cases to a polytherapy

of the two UCB brands

Consideration setBrands for treatment of Epilepsy

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Q: Which brands do patients/caregivers name together?

DepakoteDiamox

DiastatDilantin

Epanutin

Epilim

Felbatol

KeppraKlonopinLamictal

Lamotrigine

Lyrica

Mysoline

Pregabalin

Topamax

Tranxene

Trileptal

Valium

Vimpat

Zarontin

Zoloft

Zonegran




How to interpret this graph?

This graph makes it possible to render the brands in a two-dimensional space. Based on correlations in the associations the respondents make, the underlying dimensions are defined. The closer two brands are plotted together, the more these brands are associated together. The further two brands are plotted from each other, the weaker the association.

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One fourth of conversations is about multiple drugs

and people looking for the right cocktail of

medications.

1

Consideration set

Outtakes

Most brands are both discussed for monotherapy

and as add-on.2

Keppra is often discussed together with all other

major brands (Lamictal, Topamax, Depakote and

Trileptal).3

The same conclusion is true for Vimpat, but it is

also linked with Pregabalin, Zonegran and Lyrica.4


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Are some drugs linked to

specific types of epilepsy?

Link brands with epilepsy typesth

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Complex Partial

Absence

Petit mal Atonic

Clonic

Myoclonic

Tonic

Nocturnal

Temporal Lobe Grand mal

Tonic Clonic

Partial Simple

Depakote

Diastat

Dilantin Epilim

Felbatol Keppra

Klonopin

Lamictal

LamotrigineLyrica

Topamax

Trileptal

Valium

Vimpat

Zarontin

Zoloft

Zonegran

Explained variance: 37%

Ex

pla

ine

d v

ari

an

ce:

18%

Q: Which brands do patients/caregivers associate with specific types of epilepsy?




Brands indicated in bold refer

to a signficant loading on at

least one axis

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Vimpat is slightly more associated with generalized

Tonic and Clonic epilepsy.1

Link brands with epilepsy types

Outtakes

Keppra has a relatively broad positioning. It is used

for a wide range of different types of epilepsy.2

Zarontin and Dilantin are more associated with petit

mals and absences.3


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Which drugs have most side

effects?

Symptoms, side effects & brandsth

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Q: To what extent is the word ‘side effect’ (and variants) used together with each brand?

Filter: only conversations about 1 brand taken into account. Only brands with 50+ conversations in isolation

taken into account

17%

15%

14%

13%

12%

12%

11%

11%

10%

7%

3%

2%

0%

Trileptal

Zonegran

Vimpat

Epilim

Lamictal

Lamotrigine

Keppra

Topamax

Dilantin

Depakote

Valium

Klonopin

Diastat




Symptoms, side effects & brandsth

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cardiovascularconfusion

dizziness

emotional and mood

gastro

headache

memory issues

muscles

other psychological

pain

respiratory

sleep issues and fatigue

stress

vision

weight issues

Depakote

Diastat

Dilantin

Epilim

Keppra

Klonopin

Lamictal

Lamotrigine

Lyrica

Topamax

Trileptal

Valium

Vimpat

Zarontin

Zoloft

Zonegran

Q: Which symptoms and side effects are associated with different brands?




This graph indicates to which extent brands are associated with

symptoms.

Qualitative analyses (later in this report)

indicate that this can be a positive or negative association. Some of the symptoms are reason to use a

particular product (e.g. Topamax is used for

headaches)

Reasons to switch drugs

Drowsiness

Eating

Mood

Anxiousnes

s

Headaches

Wear out Anger Anger

Effective

Memory Dizziness

Concentrate

Cognitive

problems

Effective

Hair loss

Eating

problems

Confusion

Concentrate

Not effective

Liver

Hair loss

Memory

Behaviour

Nausea

Weight gain

Headaches

Ineffective

Absences

Wear out

Personality

Speach

Headaches

To...F

rom

...

Effective

Effective

Mood

Dizziness

Blurry vision

Effective

Keppra

Lamictal

Topamax

Depakote

Trileptal

Vimpat

Keppra Lamictal Topamax Depakote Trileptal Vimpat

Only combinations for which at

least one reason to switch was

mentioned are included

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As side effects are an important parameter for

people to switch drugs, the success of medicines is

dependent on the severity of its side effects. The

reason to switch table indicates that switches are

often caused by too strong side effects.

1

Link brands with epilepsy types

Outtakes

Keppra is associated with emotionality and mood

problems. 2

For Vimpat, dizziness and vision problems are often

mentioned as side effects. 3


47

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What are strengths and

weaknesses of top AEDs?

Strengths & WeaknessesKeppra

48

Strengths & WeaknessesKeppra

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Keppra, like most anti epileptic drugs is often mentioned in relation with its side effects.

Especially mood swings and sedation are frequently mentioned.

On the other hand, side effects are polarizing. While some people suffer from severe side

effects, others really love Keppra because of a lack of side effects.

Keppra is perceived an adequate product in times of pregnancy.

In contrast with last year, less conversations of Keppra related to hormones.

It has the advantage that you can get to a therapeutic dose fairly quickly compared to

other anti-epileptic drugs.

Considered relatively safe, also for young children

Keppra is the most frequently discussed product.

Often used in combination with B6 to reduce its side effects.

Both used in mono and polytherapy. In monotherapy, it is only expected to work from

1000mg. Twice a day doses are very common.

Keppra XR is known as an expensive drug without a generic version. It is linked with

insomnia, anxiety. People indicate side effects to be stronger with XR.

XR is often prescribed since it is covered by insurance.

We

ak

ne

ss

Str

en

gh

tsK

no

wn

fo

rX

R

Strengths & WeaknessesKeppra quotes

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50

It seems to be the seizure med with least side

effects

Keppra is great to be on when you are pregnant

It has the advantage that you can get to a

therapeutic dose fairly quickly compared to other

anti-epileptic drugs

Relatively safe

Quick

It has earned its nickname Kepprage from the

known issues of causing people to go offSide effects for

someKeppra can make you feel very tired at the

beginning

My neurologist put my on Keppra as I have some

liver issues too

Emily is also 4 and started Keppra

Strengths & WeaknessesVimpat

51

Strengths & WeaknessesVimpat

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Compared to other medications, it is relatively often associated with its side effects.

Frequently mentioned side effects are: vision problems, dizziness, insomnia, rashes,

headache and sedation.

Some patients are happy about Vimpat because of its effectiveness.

Vimpat is (correctly) considered as a new product. That‟s why people often do not know

what to expect from it.

The 50mg and 100mg doses are most commonly applied.

Weakn

esses

Str

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tK

no

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for

Strengths & WeaknessesVimpat quotes

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Vimpat can cause nausea and it makes me very,

very dizzy.For some people

effective, but often

with side effects

I don't know if we (the patients) know that much

about it yet. It’s new, and

therefore raises

uncertainty

… decrease the Neurontin, while he is adding

Vimpat at the same timeNot often first

medicine

prescribed, but

replacing other

meds

I just can't stand the dizziness anymore. Double

vision. No appetite.

The only major side effect I've had with Vimpat is its

interaction with Lamictal… my vision goes screwy

on me

2 patients refer to

interactions with

Lamictal

Just wondering if anyone knows or has been on

vimpat? I would like to know more about it.

I have poorly controlled seizures and have just a

few options left: Vimpat, Banzel…

Strengths & WeaknessesLamictal

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Typical side effects for Lamictal are rashes, vision problems, dizziness, insomnia and to a

smaller extent people report hair loss, weight gain and anxiety.

Lamictal is known to be a relatively safe drug. Therefore, it is often prescibed during

pregnancies (cfr Keppra).

Lamictal is both used in mono- as in polytherapy. It is often combined with a large range

of other brands, including Keppra.

Insurance companies often push patients towards the generic version of Lamictal, but

this isn‟t often appreciated by patients.Kn

ow

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or

We

ak

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Str

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t

s

Strengths & WeaknessesTopamax

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An extended list of side effects is linked with Topamax. Most commonly mentioned

effects are depressions, moodiness, dizziness, short term memory loss, sedation,

communication problems, vision problems, hair loss, body temperature regulation

problems, constipation and hypoglycemia.

Topamax appears to be a good treatment against migraine in combination with epilepsy.

For some patients, topamax “gives their brain back”, whereas the memory loss is a

negative side effect for others.

Insurance companies are putting a lot of efforts in convincing patients to use the generic

version.

Topamax is often used in combination with Keppra and Lamictal.

We

ak

ness

es

Str

en

gh

tK

no

wn

for

Weakn

esses

Strengths & WeaknessesDepakote and Trileptal

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Typical side effects of Depakote are weight gains, nausea, tremors, cognitive problems

and behavioural problems.

Sentiment on Depakote is very positive. People consider it a product with a relatively

good effectiveness/side effect ratio.

Like most anti epileptic drugs, patients are polarized about Depakote. For some of them,

it works to reduce seizures, but others suffer too much from side effects to continue

treatment.

Side effects mentioned with Trileptal are dizziness, double vision, emotional

dysregulation, headache, memory problems, mood swings, speach problems and

tiredness.

Often used for partial seizures

Kn

ow

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for

Weakn

esses

Kn

ow

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for

Depakote

Trile

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l

Str

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t

STAKEHOLDERS

Buzz and sentiment on stakeholders

58

Volume

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N = 6587 (only conversations on stakeholders)

HospitalSpecialist

Psychiatrist/

psychologist

Epileptologist

Nurse

Surgeon

Dentist

Legal

Insurance

Pharmacist

Neurologist

Organisations

and institutes

GP

Patients and caregivers discuss a lot about insurance in a very negative way. Positive sentiment on nurses and surgeons.

Patients and caregivers often refer to an epileptologist. This is a neurologist

specialized in epilepsy.

The neurologist is discussed with a mixed sentiment. This professional is

extremely challenged on its ability to get the seizure under control. When he

succeeds to provide the right med or cocktail, patients tend to be positive.

Next to this, a healthy dosis of empathy can increase her or his perception.

Problems reported with Neurologists:

• Difficult to get an appointment. “It takes an age to get an appointment”

• A lack of empathy (and even attention on what the patient is saying). They

do not always listen to the complaints of patients

Neurologists?

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I just wanted to let you know that we see a dr. in NJ that we swear

by...we thought we had the best dr. in NY as well until she didn't

get control of my seizures. We switched neuros and have been

extremely pleased.

I have always seen neurologists and they don't seem to listen too

much!

The major role of the GP is to refer patients to the right neurologist. The

role of the GP is following up the disease and controlling the symptoms. For

quick questions, people tend to contact their GP first.

GPs mostly follow the prescription of the neurologist. They hardly change the

medication of their patients themselves.

The GP?

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Sounds like you are lucky to have a great primary

care doctor who got you to a neuro so quickly.

Reasons to go to hospital

• Often visited for epilepsy diagnosis (EEG). This can be a very long

diagnosis process (sometimes 6 days), which leads to frustration.

• When seizures are not under control or when patients are going toxic on

medications, people sometimes go to the ER

When talking about the hospital, people often refer to a lack of understanding

of the disease.

People sometimes assess the quality of the hospital by its facilities as WIFI

access. (linked with the long term stay)

Hospital?

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In my experience I have found a shocking lack of understanding

among emergency treatment personnel of seizures.

Other health care professionals?

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Nurses

Often valued for their friendliness and pro-acitivity when helping patients in their

discussion with insurance companies

Pharmacists

Sometimes disucussed negatively when they want to change the medication of the

patients.

Surgeons

It appears to be hard to find a good surgeon and patients know that there is a high

risk involved in surgeries, but overall a positive sentiment in discussions about

surgeries.

Often discussed for vagus nerve implants.

Psychologists/psychiatrists

Are expected to have only a limited knowledge about epilepsy

Sometimes consulted concerning behavioural problems

The psychiatrists usually prescribes and the psychologists gives therapy.

Insurance companies?

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People tend to be negative about insurance companies. An

explanation can be sought in their pressure on patients to look for other

(cheaper) drugs. On the other hand, looking for the right medication is often a

trial and error process and changing brands is expected to have a strong

impact on seizures and side effects. That‟s why people are very negative

about the implied pressure by insurance companies.

I know insurance companies can be a big pain in

the butt! They refuse to give me my aed because I

haven't tried two others first.

My insurance company tried to switch my daughter. I went

home and called the Neuro and she wrote a new script that

said...fill as prescribed. The insurance company then HAS to

honor and pay for the script.

Epileptic organisations?

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96

26

42

Epilepsy Foundation

of America (EFA)

National Society for

Epilepsy (NSE)

American Epilepsy

Society (AES)

Epilepsy advocate

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

0,12

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

0,29

The most commonly discussed

organisation is the Epilepsy

Foundation of America. Discussions

on this organisation are also most

positive.

People do not discuss very much

on organisations. Discussions are

more about the disease itself.

SOCIAL IMPACT EPILEPSY

A first understanding of the social impact th

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Most discussions on the social impact

of epilepsy are about the impact on

patient’s professional life and

mobility.

Epilepsy is not often considered a

stigma.

Empathy (logically) leads to very high

sentiment levels. Epileptic patients

feel a clear need for compassion.

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

0,37

58

329

857

1.094

stigmaempathymobilityprofessional life

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

0,32

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

2.08

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

0,24

Impact of epilepsy on professional lifeth

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Depending on the individual situation, patients and caregivers are raising a

lot of questions about school

Which school is most optimal?

Is an individual education plan (IEP) needed? This plan documents the medical condition of the

patient and indicates what the school should do to help in a good education.

Doubt when kids can go back to school when their symptoms are more outspoken.

Doubt if the kid will pass a day at school without seizures.

How many hours a day should the child go to school.

How does epilepsy need to be communicated to the teachers?

Does epilepsy need to be communicated anyway?

...

Some patients experiment and changing medication more after a school

period (e.g. at the end of high school)

The same issues are discussed when people are already at work

What work is most suitable? Often, working from home is an option.

Is part time working better?

...

Impact of epilepsy on mobilityth

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One of the most problematic aspects of epilepsy is that people are

often prohibited to drive. The majority of the conversations about mobility

are about this topic.

Local laws prohibit patients to drive for 6 months after a seizure. And

even if this legal period is respected, insurance companies are reluctant to

insure the patient.

Even if the patient has no seizures, there are often side effects from

medication he/she is taking.

Not only driving a car is a problem.

Bikes (and even trikes) are also avoided by many patients.

Patients are adviced not to swim and take a bath alone

Some regions offer free public transport for epilepsy patients.

The immobility handicap often leads to social isolation.

Empathy and stigmath

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Conversations on empathy and understanding have a very

positive sentiment.

Patients are in need for a good support and a listening ear, not only from family and friends, but also

from neurologists and other doctors.

Some patients are assumed to „fake‟ their seizures, which leads to enormous frustrations. Especially

in the pre-diagnosis stage, an good understanding of the patient is a problem.

Conversations on stigma are relatively limited People do not often

indicate to be ashamed about their epilepsy. When they are ashamed it is

about:

Their memory issues

Their disability card

Spasms

I don't feel ashamed about it. It just is and there's

nothing I can do about it beyond taking the drugs.

SPECIFIC QUESTIONS FROM

UCB

Attitudes towards generic productsth

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People are slightly more positive on brands. Generics are sometimes „pushed‟ by insurance companies. Still, patients and doctors do not always believe that the effects of an A brand and a generic brand are equal. Budgets and money are discussed in conversations about generics, but most discussions are about the effect of generics in comparison with other brands.

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 5836

Conversations on

brands

0,23

0

-20

10

-10

-40

-30

20

30

40

50

60

70

80

90

-50

N = 832

0,19

Conversations on

generics

Q: What is the attitude towards generic products in comparison with brands?

When I asked my neuro, he said the generics aren't

working for his patients.

My epitologist says that generic anti-seizure meds

are not as effective as the name brand

Yes, insurance companies will often change your

prescription to generics.

I always go to Boots to get mine, as they only stock

the original stuff

2% of brand

conversations is

about the budget

10% of generic

conversions is about

the budget

Who decides?th

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Neurologists decide on the chosen medication molecule and dosage. The dosage and molecule selection are often decided in an experimental way. Molecules that work for some patient do not work for others. Patients are often treated with several brands before the final brand or polytherapy is selected. A doctor can decide to change products, based both on side effects and effectiveness.

The patient impacts the product choice indirectly as it is he or she who has to live with the side effects. When side effects are intollerable, people usually switch products. Patients mostly do not ask for a product or molecule, but complain about the effectiveness and side effects prior to a switch. Sometimes, patients ask NOT to presciribe a specific brand when they know examples of strong side effects for this product.

The caregiver often has an impact when the side effects are of a behavioural or cognitive nature (anger attacks,...) In that case, caregivers make patients aware of their behaviour, and the patient mentions this side effect to the doctor.

Q: Who decides on treatment and medication?

I have been switched from … to …

Pharmaceutical companies?th

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Q: Do people discuss about pharmaceutical companies?

Pfizer: 8 conversations

UCB: 21 conversations

GSK: 3 conversations

Brands are associated with diseases, not the companies producing these brands. People do not often discuss about pharmaceutical companies. When they do, it is in most cases a a discussion about the brands the company is producing

UCB is the manufacturer of Keppra.

UCB makes Keppra and now Lacosamide (Vimpat).

Pregnancy and epilepsy?th

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As indicated in the brand analyses, discussions about pregnancy are often

about the impact that anti-epileptic drugs could have.

Two brands are considered relatively safe for pregnancy reasons. Lamictal is

discussed most often as suitable during pregnancy. Even if this is a less

optimal solution to tackle seizures, Lamictal is often prescribed. Keppra

holds a second place.

10% of pregnancy conversations mention the word Lamictal

5% of pregnancy conversations are about Keppra.

N = 276 (conversations on pregnancy)

Q: What do people say about pregnancy?

Not discussed online...th

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Specific reactions on IV treatment

Different medications provided in hospitals or ER

Reasons for compliance

76© In

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About InSites Consulting

77© In

Site

s C

on

su

ltin

g

11 mio euro turnover

+2.5 mio panel members in +25 countries

80 employees

Projects in +35 countries

Offices in Ghent, Rotterdam, London & Geneva

Yearly growth +40% last 7 years

Since 1997

Full-service

Independent

Working for 40% of best global brands (2008)

In a nutshell

78© In

Site

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Annelies Verhaege

[email protected]

Tel. +32 9 269 14 06

Carl Vandeloo

[email protected]

Tel. +32 9 269 14 27

Steven Van Belleghem

[email protected]

Tel. +32 9 269 16 07

InSites Consulting

Head office

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Documents

Online conversation tracking Intermediary results: Specific … · 2016. 1. 20. · Background & Objectives Background • On social media, there are an increasing amount of conversations