Social media as the central nervous system for learning about epilepsy

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Every year, companies spend over 32 billion U.S. dollars on market research worldwide. More than 95% of this money is

spent on some form of traditional research, based on interviewing (Esomar 2009). Undoubtedly, such research is valuable. But do we really listen to the market in such a culture of interviewing? Are we capturing spontaneous thoughts and feelings if we move people through rigid research processes of surveys and focus groups?

What to expect?

The issue with traditional research methods is that we always rely on consumers’ recall of behaviour, that the granularity and context may be too abstract and time pressure too great (Hayward 2009). Several forms of interviewing bias may arise, even when we thoughtfully set up a survey. Researchers frame the questions from their

own perspective and may omit certain topics which consumers find important. The mere act of interrogating people, along with the social nature of the interview, has the potential to influence the information we obtain.

Furthermore, people often are unreliable witnesses of their own experiences and emotions (Kearon and Earls 2009). Needs may be latent (and thus not consciously available) and in these situations individuals are often unable to express their true desires and feelings.

What to expect?

Examples from the launch of new products are countless. Examples include the PC, the mobile phone and the Internet. In sum, these characteristics of interview-based research may hinder marketing researchers from finding the ‘golden nuggets’ they are looking for.

A changing environment: social media & user-generated content

With the arrival of the web and its semantic evolutions, the abilities of consumers for external information search and communication have increased considerably. Consumers share,

participate, collaborate and self-generate content online. They cache their lives on social media daily by sharing and storing events publicly ( The topics vary from daily emotions and activities over brand experiences to health-related topics. A quick search on different

social media makes it clear that a great many blogs, forums and social networks contain information related to health. As people take control over the management of their own health and their own medical treatment, they show the desire

to use social media to help guide their decisions.

On sites such as,,…, patients query one another and report about their health condition and even friend up with others. Many patients and caregivers use these kinds of platforms to share realistic experiences, clinical content and emotional comfort with peers. This process is convenient and the information is often more accessible than the “official” information

from pharmaceutical companies and physicians. Patients relate to

online peers - as they would with a new family - who really understands their situation from the perspective of everyday life (Solomon 2009, Huber 2008, Sarasohn-Kahn 2008). Recent research provides evidence. A Pan-European health study reports that more than 70% of Internet users look up health-related

information online at least a couple of times a year (InSites Consulting 2008). Within the online tools, social media are third in line and they are on the rise (Sarasohn-Kahn 2008), while Harris Interactive found that 47% of US citizens want to be in touch with health organizations through social media (Solomon 2009). Clearly, health care no longer only happens between a single patient and the physician.

Most business cases focus on how to get the most out of social media from a marketing communications and consumer involvement perspective. We want to convince them, call on them for action. In this paper we take a different position. Specifically, our goal is to

illustrate the value of social media for research and learning purposes, not as a promotional tool. Observing what is going on in social media, listening and taking in feedback compose a first necessary step before joining and facilitating the conversation.

Netnography: a new opportunity in pharmaceutical market research

While the information which patients self-generate

is out there, we have not yet adapted our research tools to collecting and analysing that information. We need to take advantage of observing the information people self-generate and cache online, without triggering them to provide it. For marketers and researchers, the semantic web evolution opens new opportunities compared to interview-driven primary market research.

By systematically analysing the self-generated content on (health-related) social media, pharmaceutical companies can gain insights into how people deal with a diagnosis, identify the support they want and build new solutions to reach out. We therefore see a lot of potential in the analysis of the actual content of spontaneous consumer and patient feedback by means of social media netnography.

Figure 1 - Situating netnography in the research landscape

Social media netnography is defined as types of observational research using publicly available user-generated content to answer research questions or generate insights. See Figure 1 for situating social media netnography in the research landscape.

Social media netnography is different from other methodologies in that we are not in an interviewing but a listening mode. The consumers determine the topics in the content they self-generate. The types of analysis are a fusion between qualitative and quantitative techniques. The former are done by means of content analysis and the latter by means of text analytics - see below.

Social media netnography is valuable for generating consumer and patient insights, since it is more

relevant and natural compared to interview-based techniques. This has several related consequences:


Reduced interviewing bias. Interviewing bias can originate from the interviewer, the participant or the situation itself. When performing social media netnography we are not asking questions to participants, we collect answers which we try to relate to questions. The social media activities, which generate the information, occur in a natural context. It is part of people’s daily activities and thus in that sense less biased. The observation is unbiased as there is no interpretation or deliberation from the participant’s end.


New consumer and patient insights. The basic issue goes back to the core of what an “answer” is. According to Merriam-Webster’s dictionary an answer implies “satisfying a demand or need or the solution to a problem.” Within the context of a commercial business operation, the only answers which are business-critical are those to new and relevant questions - all the rest is just 'nice to know'. The “new and relevant” bits are where social media represent breakthroughs for companies. Until now,

one has never known if the questions asked in a questionnaire were indeed the most relevant and important in the consumer's (here patient's) mind. We only get answers to those questions that are asked explicitly. As we are sitting on a mountain of data generated by users, we need to ask ourselves what to get out of it. When doing so, we will discover topics and patterns which we did not think of naturally. We will get answers to questions we did not ask not even to ourselves. This refers to the ability of social media netnography to define unmet needs and its complementary role to interview-based techniques.


Actual & contextual information. A reference frame (like a truth thermometer) is built-in into the web, which allows identifying relevant and important (new) answers and qualifying and quantifying them in context. The input from patients comes in their mother tongue and they report on what they find important from their personal perspective. The information also contains more contextual information, as people report their thoughts and feelings in the “heat of the moment”, not when they are probed to recall it.


Emotional insights. As opposed to traditional interviewbased research, netnography also gives (more) complete answers as the emotional component of an answer is captured and connected to the rational response. An

emotionally charged answer (regardless of the type of emotion) is always more important and actionable. Besides, emotions are not easy to measure with explicit and direct questions in surveys on all potential topics.


An additional advantage from a methodological perspective is that one can do research over

long periods of time, as the researcher can go back in time - as far as the social medium holds relevant data from user posts.

For sure asking questions to people in a guided way will always have value and respondents are not able to consider all aspects relevant to business either. The value lies in the fact that results from netnography studies can triangulate findings from other methods. Any findings can be cross-examined or existing

questions have to be reframed or methods reconsidered.

UCB: Patient Centricity in action The biopharmaceutical company UCB has a clear

“Patients at the heart” is embedded in all

focus on medicines for severe diseases and has

functions, all communications and all

deliberately integrated a patient-centric approach in its

initiatives. In order to reach this mission, UCB

corporate vision. Introducing this philosophy has to help

uses marketing and market research to

those patients with severe diseases to lead a more ‘normal life’ again.

better connect with and understand patients. While it has so far relied on interview-based market research techniques for generating insights, UCB is now engaging in netnographic studies. It generates additional and complementary insights and enables to truly listen to the patients’ voice.

A case study for epilepsy

The objective of the study presented here was to learn more about the spontaneous online conversations about epilepsy. More specifically we investigated:


The topics patients and caregivers bring up as well as their volume/ the frequency of doing so


The sentiment and emotions people have concerning each topic


The brand conversations, their associations and emotions


The natural language patients and caregivers use when talking about seizures in relation to

different stakeholders (e.g. friends, physicians, society)

This study is relevant for UCB bearing in mind its positioning as the “epilepsy company” and several new compounds which have been launched or are in the pipeline (Vimpat, Brivaracetam).

Method Our methodology consisted of 4 stages. For a detailed description we refer to Verhaeghe, Schillewaert and Van den Berghe (2009):


UNIVERSE DETECTION FOR SAMPLING We identified as our sampling frame all relevant, publicly accessible social networks (blogs, forums, social video sites…) related to health and epilepsy. Unlike traditional research methodologies, we do not seek to obtain a

sample of respondents but rather a sample of Internet sources.

Method 2


As mentioned earlier, patients were not triggered to provide data. Instead, we used

web scraping to collect from the universe the available information the users had generated. After data cleaning, we analysed 39,812 unique and relevant conversations originating from 20 websites. The sites’

countries of origin were mainly the USA (39%) and the UK (51%). The tracking period covered the time span of 1 June till 31 October 2008.

Method 3

FRAMEWORK DEVELOPMENT Meanwhile all relevant topics were defined for further analysis referring to different health conditions, emotions and context variables associated with epilepsy. Not all collected information was equally relevant to our research question. This phase of selecting and prioritising is very similar to

making a topic guide or questionnaire in traditional research. Examples of such key words are mobility, public concern, grand mal, forgetfulness, fatigue, reimbursement, effectiveness, social….

Method 4

ANALYSIS Data were analysed applying the augmented research model and text analytics (see Figure 2). Text analytics benefits from the analytical power of software programs and gives meaning to vast amounts of unstructured (textual) data. Underlying clusters and relations between information

are unveiled, which goes beyond what the researcher usually detects by simple eyeballing . A top-down content analysis was combined with pattern-detection techniques for bottom-up content identification. The top-down phase applies a predefined taxonomy of labels. In the bottom-up stage, we “let the data speak” and the software revealed topics and underlying information patterns. These findings were enriched with a traditional qualitative analysis on the original, raw verbatims. The last phase is

required for putting findings into the right context.


Figure 2 - The augmented research model for netnography

Findings In the following paragraphs we will report some of our findings based on the methodology described above. Due to confidentiality reasons we have disguised all brand names and cannot fully report all research results and recommendations.


INFORMATION CLUSTERS IN CONVERSATIONS By performing the bottom-up analysis we “let the data speak”. In doing so we identified 30 information clusters which epileptic

patients and caregivers talk about. Social media conversations around epilepsy mainly relate to (1) seizures, (2) health care, (3) awareness and knowledge about the disease, (4) treatment and (5) children (see Figure 3).

Other runners up in this analysis were topics such as children, helpful and night. These topics where not yet clearly identified by UCB

and, hence, enhanced insights on the natural conversations of epileptic patients.

Findings 1

INFORMATION CLUSTERS IN CONVERSATIONS Such an analysis reveals actual, real and relevant patient concerns, beyond the boundaries and the framework of what pharmaceutical marketers and researchers pretend or believe to know about the epileptic patient.

These findings will be extremely useful to design or fine-tune the questionnaire for future interviewbased patient surveys, ensuring that those topics are developed in a structured way and go beyond an anecdotic mention.

Figure 3 - Information clusters of patient conversations

Findings 2

SEIZURE: THE NEED FOR A NATURAL LANGUAGE In a detailed analysis of the topic “seizures”, we found that patients mainly talk about the disease

in broad terms. They describe seizures to peers in the perspective of everyday life. Only 1 in 4 conversations about seizures contain a scientific classification of epilepsy. Traditionally physicians and communications from pharmaceutical companies explain epilepsy in complex technical and medical terms. Learning and listening to natural patient language will generate new insights. Compared to traditional interview-based research, netnography taps into the natural peerto-peer explanations without any bias of interviewer vocabulary. However, before we can use this language in marketing communication, we need to link the natural vocabulary with the right medical classification of seizures, to capture how patients translate and rephrase the scientific terminology.

Findings 2

SEIZURE: THE NEED FOR A NATURAL LANGUAGE Therefore we analysed those 25% of conversations which included a scientific classification of a seizure and we studied the natural language around it. Pharmaceutical companies are keen to use this language when describing complex phenomena. Table 1 provides an overview of such analysis for the “Grand Mal” and “Petit Mal” seizure types.

Table 1 - Examples of natural explanations of seizure types

Findings 3

AWARENESS AND KNOWLEDGE: THE SOCIAL IMPACT OF EPILEPSY This analysis provided us with insights

schools and family and another 2% to society in

into the patients’ information needs

general. Based on this analysis we were

concerning their disease. It comes as no

able to define the most relevant questions

surprise that patients have many and varied

patients have concerning the disease,

questions. They are especially centred on the

which UCB subsequently used to align

patient and on how to deal with and control

their communication towards patients and

seizures in the direct social environment. Many conversations also relate to the information exchange with the doctor. In fact, the

more specifically the web site content. Specific examples of FAQs which were not yet on the UCB site: How to make a child’s school

knowledge topics focus on 4 stakeholders

aware? I am depressed and I do not know what

as illustrated in Figure 4: 56% of the awareness

to do? What is the impact of one’s diet on the

and knowledge conversations are related to the


patient himself, 30% to the doctor, 19% to

Findings 3


Figure 4 - Awareness related to different stakeholders



AWARENESS AND KNOWLEDGE: THE SOCIAL IMPACT OF EPILEPSY We could also provide recommendations for website designs. They should be simple in format : not too many flickering and flashing applications with bright colours, in order to avoid triggering seizures among individuals with photosensitive epilepsy. Patients also have a need to engage in conversations both with

pharmaceutical companies and with healthcare professionals. We learned how much mental effort such a post requires for some patients. They expect and deserve our prompt answer!

Findings 3

AWARENESS AND KNOWLEDGE: THE SOCIAL IMPACT OF EPILEPSY The analysis of patients’ awareness and knowledge conversations allowed us to develop the “do’s and don’ts in case of a seizure”. This will guide the development of communication messages for school, families, friends and social organizations. It was apparent from our analysis that the patients‘ need for information focused on the direct environment

rather than on the society. Patients are not asking

for larger awareness campaigns; they are mostly concerned about how relatives, friends and their direct environment can handle a seizure.

Findings 3

AWARENESS AND KNOWLEDGE: THE SOCIAL IMPACT OF EPILEPSY The awareness and knowledge topic analysis

In addition, there is a public concern to having

revealed an additional perspective on the

as many seizure-free periods as possible

societal aspect of epilepsy. Epileptic

thanks to medication. Such periods enhance

patients first of all are human who are

patients’ self-confidence and self-esteem. Such

concerned about their dignity. They fear

topics about social exclusion and acceptance are

that their epilepsy may lead to social exclusion. Therefore patients and

caregivers want personal control over their situation. This relates to e.g. parents who are afraid of losing control over their child when they are not there or patients who are afraid of being alone.

almost impossible to measure with interview-based research, while these natural conversations

provide a great deal of contextual detail and reveal real-life concerns.

Findings 3


Figure 5 - Societal concerns concerning epilepsy

Findings 4

BRANDS: A MATTER OF SENTIMENT Further analyses were

associated with each brand and

positive comments about

performed at the brand level.

to determine whether more

brand A are mainly related to

We analysed the content of the conversations based on

positive or negative emotions

prevail. As illustrated in Figure 6, brands A, I and J are loved while

the fact that the medication truly works for patients, as

(1) whether they contained

brands E, G and H are to some

reported by caregivers as

brand names of anti-epileptic

extent “bashed” by the online

well as patients themselves.

drugs and (2) what the

community. Once marketers

Such an analysis of raw

sentiment or emotion of the

have this information, they can

comments can be best compared

act upon it by drilling into the

with the reporting of positive or

specific comments patients

negative critical incidents with a

provide and search for the

certain product, e.g. as in

mentioned. This allows us to

“sources” (or “why’s”) of the

customer satisfaction studies

assess the overall tone of voice

sentiment. In our example, the

(Flanagan 1954).

conversation was when a specific brand was

Findings 4


Figure 6 - Brand sentiment analysis

Findings 4

BRANDS: A MATTER OF SENTIMENT The add-on here is that these critical incidents are immediately classified as holding positive or negative sentiments. Compared to traditional interview-based techniques, such analyses also are a

form of indirect, thus less biased, measurement, as they allow the researcher to measure

different aspects which cannot be measured with traditional techniques. For example, one cannot ask respondents about their emotion towards a specific brand during a specific and immediate experience. In fact, respondents might be unable to accurately recall their emotions and thus be unable to respond to such a question. Even if they were able to respond to it, they may not be willing to report such intense and personal feelings (e.g. because they believe it to be politically incorrect to do so).

Findings 5

FINDING BLIND SPOTS ABOUT BRANDS When performing a bottom-up

analysis on the specific brands, a number of blind spots were identified. These blind spots are to be considered as new insights as they generate a new perspective relevant for marketing. One such insight which caught our attention was the topic, related to brand A, involving hormones. Over 7% of all natural conversations around brand A were related Figure 7 - New insights on how hormones are related to brand A

to hormones, pregnancy and uncertainty (see Figure 7).

Findings 5

FINDING BLIND SPOTS ABOUT BRANDS Changes in hormone levels may be a trigger for epilepsy seizures among women. The drug (brand A) can help control seizures, but in case of inadequate control, adding oral contraceptives increases efficacy in seizure control. However the anti-epileptic drug might jeopardize the efficacy of the birth control pill and disturb the ovulation cycle. As such it is a continuous trade-off between controlling the epilepsy and wanting to start a family or contrary not wanting (any) more children. In addition to all of these issues, patients also raise questions about the safety of using the epilepsy drug during pregnancy. All in all, these conversations indicate the high uncertainty

patients have around epilepsy and birth control. This link was new to UCB Pharma.

Limitations Social media netnography also has to deal with specific issues. At the start of the study the outcomes are

uncertain / difficult to predict. This leads to a higher ambiguity and uncertainty among researchers and users. Marketers and researchers were not trained to not ask questions; they are rather used to getting answers to questions they did not even ask. From a data perspective, due to the nature of the web 2.0, scraped content from social media does not always hold information about the profile of the person who posts it (e.g. in terms of age, gender, region…). Despite the vast amount of data, the coverage is not uniform and profiling remains difficult, which makes it less feasible to draw a representative picture for a certain population. Many platforms are

also still Anglo-Saxon, mainly originating from the USA and the UK, while on the other hand text analytics software packages have limitations in processing vast amounts of data from different languages. Some disease- and health-related topics may not have enough rich online conversations for a thorough netnography analysis. Doing an upfront feasibility check is therefore of utmost importance.


During the last two years InSites Consulting and UCB invested a lot in tracking online conversations. In doing so we have built our experience and came to several conclusions in terms of its applications, methods and reporting.


UCB now actively applies online

than just blogs. Getting insights directly from

conversation studies as input to increase

patients during spontaneous discussions has

the effectiveness of its brand plans. It was

also helped UCB to take steps in putting

important to position - towards brand managers - social media netnography vs. interview-based research. The challenge is not to have

netnography studies perceived as “(blog)

trackers”. Trackers provide more reactive and tactical numbers, whereas studies as the one illustrated above have more content and a strategic impact on

brand planning. For this reason we should avoid the term “blog tracking”, but also because it includes much more

patient-centricity into action. These innovative methods, albeit exploratory research, allow continuous listening and market sensing. We have also learned that social media

netnography can lead to new consumer and patient insights. If managers discover new insights, new phenomena, they might realise that those insights are problem and at the same time solution at the same time. This can then result in an actionable return; e.g. an idea for advertising, innovation or experience.


As for the method and process of netnography studies, we learned that the feedback and connection between client and agency are of utmost importance if one wants to perform useful deep analyses. There is a need for multiple and repeated presentations of top-line results early on in the process, even before all analyses are performed, especially after a bottom-up analysis. The sequence order of the research phases is also different from traditional research. In social media netnography we start with sampling and data collection. Once we have the data we start “asking” by finding answers which we try to relate to information needs we have.


The formats of reporting using e.g. tag clouds, sentimetres and associative network analysis often need adequate and additional explanation to avoid confusion or even rejection. Today’s

patients are more empowered and will increasingly use

social media to ask and give feedback about their disease condition. This implies that internal marketing and customer insights departments and perhaps entire organisations will need to be more tuned into this new way

of communication. The market researchers of the future will not only have to be excellent in asking but also in listening!

About the authors Annelies Verhaeghe R&D consultant, InSites Consulting

Prof. Dr. Niels Schillewaert Managing Partner and co-founder, InSites Consulting

Rudi Van Campenhout Associate Director, Global Operations Marketing Excellence, UCB Pharma

René Hansen Global Director Business Transformation, UCB Pharma

Prepared by : Prof. Dr. Niels Schillewaert Managing Partner InSites Consulting

Elias Veris Consultant ForwaR&D Lab InSites Consulting

Björn Cassier, Managing Director The Insiders

Bart Baeyens Marketing&Sales Manager The Insiders

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