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There is an unmet need for a better understanding and management of headache, particularly migraine, beyond specialist centers, which may be facilitated using digital technology.
The objective of this study was to identify where, when, and how people with headache and migraine describe their symptoms and the nonpharmaceutical and medicinal treatments used as indicated on social media.
Social media sources, including Twitter, web-based forums, blogs, YouTube, and review sites, were searched using a predefined search string related to headache and migraine. The real-time data from social media posts were collected retrospectively for a 1-year period from January 1, 2018, to December 31, 2018 (Japan), or a 2-year period from January 1, 2017, to December 31, 2018 (Germany and France). The data were analyzed after collection, using content analysis and audience profiling.
A total of 3,509,828 social media posts related to headache and migraine were obtained from Japan in 1 year and 146,257 and 306,787 posts from Germany and France, respectively, in 2 years. Among social media sites, Twitter was the most used platform across these countries. Japanese sufferers used specific terminology, such as “tension headaches” or “cluster headaches” (36%), whereas French sufferers even mentioned specific migraine types, such as ocular (7%) and aura (2%). The most detailed posts on headache or migraine were from Germany. The French sufferers explicitly mentioned “headache or migraine attacks” in the “evening (41%) or morning (38%),” whereas Japanese mentioned “morning (48%) or night (27%)” and German sufferers mentioned “evening (22%) or night (41%).” The use of “generic terms” such as medicine, tablet, and pill were prevalent. The most discussed drugs were ibuprofen and naproxen combination (43%) in Japan; ibuprofen (29%) in Germany; and acetylsalicylic acid, paracetamol, and caffeine combination (75%) in France. The top 3 nonpharmaceutical treatments are hydration, caffeinated beverages, and relaxation methods. Of the sufferers, 44% were between 18 and 24 years of age.
In this digital era, social media listening studies present an opportunity to provide unguided, self-reported, sufferers’ perceptions in the real world. The generation of social media evidence requires appropriate methodology to translate data into scientific information and relevant medical insights. This social media listening study showed country-specific differences in headache and migraine symptoms experienced and in the times of the day and treatments used. Furthermore, this study highlighted the prevalence of social media usage by younger sufferers compared to that by older sufferers.
Approximately 50% of people experience a headache in any given year [
Globally, migraine is the second leading cause of disability and is especially burdensome in young women, according to the Global Burden of Disease 2018 [
Despite the advances in treatments, the management of headache disorder is often suboptimal, generally due to misdiagnosis or underdiagnosis of the disease. Lack of training in diagnosing and managing headache disorders is also an important reason for inadequate headache health care [
Infodemiology is the science of distribution and determinant of information in an electronic medium, specifically the internet, with the ultimate aim to inform the public health and public policy [
We conducted an infodemiological study in Japan, Germany, and France based on social media posts on headache and migraine to identify where, when, and how people discussed their symptoms and treatments. This study aimed to capture the perspective of sufferers and to check their awareness about headache, with a unique approach of listening to their feelings and understanding their expectations. The insights from this study could be helpful for physicians and specialists to help them manage the disease better.
This infodemiological study was based on the secondary use of data obtained from social media posts on headache and migraine, which were analyzed in an aggregated, cross-sectional manner at a population level. Using the Detec’t web crawler [
Web scraping of the messages was performed depending on the HTML structure of each channel. Searches were conducted by Pulsar company, a medical communications agency, and were based on the main language of the country being investigated.
Pulsar is the only social listening tool on the market offering social listening, monitoring, and audience segmentation in one tool. The Pulsar platform is a complete monitoring and analytics tool to measure and optimize performance across the owned social channels and websites [
Posts containing at least 1 keyword (Table S1 in
ameblo.jp, detail.chiebukuro.yahoo.co.jp, blog.goo.ne.jp, blog.livedoor.jp, and blogs.yahoo.co.jp
ubria.de, ht-mb.de, onmeda.de, jameda.de, and forum.glamour.de
forum.doctissimo.fr, babycentre.fr, grossesse.aufeminin.com, forum.hardware.fr, and bebes.aufeminin.com
A predefined search string was used to identify social media posts and dialogues on headache and migraine in local languages. This helped in segregating data across the 3 countries. Several data aggregators with specialties across different channels and social media platforms were used to assimilate the relevant keyword-based content.
The keyword data collection used initially was selected by the authors while designing the study to reflect common terms used in the literature and in the sufferers’ real-life settings. This collection was designed with the Boolean AND operator to collect data on pain experiences (headache, migraine(s), head AND pain, and head AND sore), medicinal treatments (head AND painkiller and head AND ibuprofen), and nonpharmaceutical treatments (head AND herbal and head AND massage). Local languages, Japanese, German, and French, were used (Table S1 in
Total volume of posts (N=3,962,872) and unique social media profiles (N=989,000) split by social media channelsa.
Channel | Total volume of posts, n (%) | Unique social media profiles, nb | |||
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2,670,525 (76) | 732,000 | |||
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Blogs | 524,591 (15) | 19,000 | ||
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Forums | 288,597 (8) | 23,000 | ||
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YouTube | 22,698 (1) | 10,000 | ||
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Review sites | 3417 (0.1) | 2000 | ||
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|||||
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83,366 (57) | 26,000 | |||
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Forums | 29,251 (20) | 14,000 | ||
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Blogs | 14,772 (10) | 6000 | ||
|
YouTube | 14,480 (10) | 7000 | ||
|
Review sites | 4388 (3) | 2000 | ||
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|||||
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231,532 (75) | 110,000 | |||
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Forums | 53,964 (18) | 25,000 | ||
|
YouTube | 19,144 (6) | 10,000 | ||
|
Blogs | 1902 (1) | 2000 | ||
|
Review sites | 245 (<0.1) | 200 |
aBased on data collected from keywords.
bDue to anonymization of individuals, the number of unique social media profiles is presented at an aggregated level and rounded to the nearest 1000.
All data analyzed in this study were obtained from publicly accessible sources without accessing password-protected information. All data used within this study have been aggregated and anonymized and do not include any personally identifiable information. The use of these data for this study was legally available and ethically appropriate, as they were obtained from publicly accessible platforms and were analyzed only at a group level. All users’ personally identifiable information was strictly protected according to the user privacy terms of Twitter Inc, and all user identity-related text content from user tweets was not presented in any tables or graphics.
The key objective of the study was to collect unprompted conversational insights: conversation that was not provoked by direct questions, by identifying where, when, and how people talked about the symptoms, severity, frequency, and times of the day of their headache, medicinal products, and nonpharmaceutical treatments.
The convenience sample comprised the total headache and migraine data set to meet the primary objective.
Keyword filtering was used to derive percentage distributions of the language used in social media posts, referencing headaches and migraines. Keyword filters were then combined into broader semantic themes. The descriptive results used the volume of data for keyword filters and the percentage distributions within the respective semantic theme.
Posts refer to the number of observations. Analyses refer to the calculations performed on the total number of posts identified to segregate the number of posts describing pain (symptoms, severity, and frequency), times of the day of their headache, and use of medicinal products and nonpharmaceutical treatments.
We considered that a method from an earlier study [
Inferential analysis is essential when running infodemiology studies to provide analysis of audiences where real-world information on demographics is lacking, as individuals do not complete their social media profiles to include their age, for example, therefore ruling out descriptive statistics on the grounds of reliability.
Descriptive insights about demographic profiling of the participating audiences were carried out in an anonymized manner and aggregated format for a unique profile. The age of the sufferers was estimated by identifying specific expressions within the post. Data signals from network connectivity and URLs shared were used in the demographic profiling, a demographic analysis that is commonly used by marketers [
An overview of social media posts per country, posts per analyses, and unique social media profiles is shown in
Posts per market and posts per analyses.
Analysis | Japan (1-year period) | Germany (2-year period) | France (2-year period) | ||||
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Total headache and migraine data set | 3,509,828 posts | 146,257 posts | 306,787 posts | |||
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Pain experiences and symptoms | 51,628 posts | 32,452 posts | 25,427 posts | |||
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Time of day referenced | 24,302 posts | 17,128 posts | 28,619 posts | |||
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Pain experience by time of day | 21,035 posts | 12,597 posts | 26,568 posts | |||
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Medicinal treatment formats | 12,307 posts | 17,857 posts | 8257 posts | |||
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Medicinal treatments | 4055 posts | 456 posts | 9691 posts | |||
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Nonpharmaceutical treatments | 19,644 posts | 11,603 posts | 5026 posts | |||
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|||||||
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Total headache and migraine data set | 3,509,828 posts |
146,257 posts |
306,787 posts |
|||
|
Filtering by severity and frequency | 153,664 posts | 30,063 posts | 49,088 posts |
Among the total unique social media profiles 989,000 noted in
Age distribution of the total audience.
Age (years) | Japan (N=135,000), n (%) | Germany (N=5544), n (%) | France (N=11,500), n (%) |
13-17 | 31,050 (23) | 784 (14) | 1495 (13) |
18-24 | 60,750 (45) | 2184 (39) | 3910 (34) |
25-34 | 24,300 (18) | 1232 (22) | 3680 (32) |
35-44 | 8100 (6) | 728 (13) | 1150 (10) |
45-54 | 6750 (5) | 448 (8) | 920 (8) |
≥55 | 4050 (3) | 168 (3) | 345 (3) |
The posts and dialogues describing pain differed across countries. The lowest proportion of posts of specific pain features and symptoms associated with headache or migraine was from Japan sufferers. The most detailed posts on headache or migraine were from Germany. Japanese sufferers used specific terminology, such as either “tension headaches” or “cluster headaches” (36%), whereas French sufferers even mentioned specific migraine types, such as “ocular” (7%) and “aura” (2%). The “pain” features, in general terms, were discussed by almost one-third of the sufferers from all the countries. In Japan and France, 13% and 23% of those writing posts, respectively, mentioned “stress,” whereas “nausea,” a symptom typically associated with migraine, was discussed by 21% of those writing posts in Germany (
France was the only country where sufferers discussed more about times of the day than the pain features and symptoms (28,619 vs 24,302 posts for Japan and only 17,128 posts for Germany). The French sufferers explicitly referenced “evening” (41%) or “morning” (38%), the Japanese sufferers mentioned mainly “morning” (48%) or “night” (27%), and the German sufferers mentioned mainly “night” (41%) or “evening” (22%) times of the day (
Multiple posts of pain descriptors, especially with reference to “times of the day,” were compared with the total “posts” in all countries. “Stress” was mentioned multiple times across all “times of the day” by Japan sufferers, whereas the majority of German sufferers mentioned “increased pain” as the day progressed. “Pain” was mentioned between 27% and 31% in the evening and night by France sufferers with “stress” and “anxiety” as the most prevalent pain experiences (
Type of pain and time of the day. (A) Japan, (B) Germany, and (C) France.
The medicinal treatments were discussed mostly in generic terms in all countries. Overall, there was a preference in using generic terms rather than mentioning specific types of a drug, such as medicine, tablet, and pill painkiller (
The top 3 nonpharmaceutical treatments comprised water, caffeinated beverages (coffee and tea), and relaxation methods (massages and general relaxation) across all countries. The most prevalent nonpharmaceutical treatment in Japan was staying hydrated by drinking water, which was referenced in 19% of posts, followed by massages (17%) and relaxation (8%). There was also a proclivity for using different ingredients, such as “plants” and “ginger,” to soothe the effects of headache, whereas “coffee” was discussed most frequently, with a 23% share of these posts in Germany and France (
This infodemiological study provided real-time, dynamic information from headache and migraine sufferers about their symptoms, severity, frequency, times of the day, and use of pharmaceutical and nonpharmaceutical treatment patterns. In this digital era, social media sites are being perceived as an instant source of information and emotional virtual support for managing headache and migraine. Many headache and migraine sufferers use social media to exchange real-life experience, to express suffering, and to vent out their frustration. An analysis of these data may improve the understanding of what is being experienced and offer insights into knowledge gaps that would help those with headache disorders, including migraine. It is somewhat surprising that despite the potential sensitivity of social media information and an increase in social media listening studies, there is a lack of national ethical guidance and harmonization on the methodology used for using social media in research [
Social media listening offers a better understanding of salient migraine experiences by analyzing social media behaviors. This kind of infodemiological work could uncover conversations not conducted within the health care setting and would be helpful in better management of disease by guiding clinicians in communication with patients and in making clinical decisions. This study generated unique data from a range of social media sites, such as Twitter, web-based forums, blogs, YouTube, and review sites to obtain where, when, and how headache and migraine sufferers talked about the symptoms experienced and treatments used. Our results highlighted country-specific differences in the specific details of the symptoms of headache and migraine, times of the day, and medicinal or nonpharmaceutical treatment used. One important limitation for the scientific value in this kind of research remains the “hypothetic” prediction of the demographic indicators, which could potentially induce some bias in the interpretation of results. In practice, the representativeness of our population is not easily accessible. However, the study population was randomly selected in the connected social networkers or “sufferers.”
The findings of this study provide qualitative insights into the real-life experiences of headache and migraine, while there is currently limited published qualitative research, especially from web-based forums, blogs, YouTube, and review sites. Of note, the symptoms experienced, or treatments used, as discussed by the sufferers on social media sites, were consistent with those reported in other studies [
Twitter is an information carrier allowing people instant access to diverse sources. Most of the data generated in this study are captured from Twitter. In a cross-sectional analysis of Twitter activity by Callister et al [
Our study findings showed country-specific variations in terms of sufferers mentioning their “pain experience” and medicinal and nonpharmaceutical treatment patterns used. The findings of this study provide valuable information on web-based discussions involving “medicinal treatment terminologies” used by the sufferers allowing a better understanding of the needs and concerns of sufferers taking or considering taking headache and migraine medicines. The mention of medicines used by sufferers within this study appears to concur with previous findings. Paracetamol alone or in combination was mentioned from 81 posts—7284 posts in all countries with a higher proportion in Japan and France, which is in line with a French study that found that the majority (7.5%) of sufferers were using paracetamol alone or in combinations for managing their headache and migraine [
The data acquired within this study give a unique insight about headache and migraine sufferers’ behavior and perspective in different countries on different social platforms and thus provide a unique way to better understand disease burden and unmet needs of these sufferers by studying real-life experiences beyond cultural aspects. The spontaneous and real-time responses captured by social media posts on the onset of a migraine attack could assist clinicians in determining what types of triggers and conditions produce worse or better outcomes for sufferers. These types of studies reveal what are the daily life experiences of sufferers, their behaviors, and perceptions outside the medical setting in the real world. Information about a patient’s emotional responses or expressive patterns related to migraine onset could potentially become an effective assessment in predicting adjustment to the migraine burden. In this study, the age and gender were predicted based on the language used and the screen name to define the demographic profile of the study population, which could have led to a bias in data interpretation. Further, it was not possible to determine age and gender for some profiles, which is one of the limitations of a real-world study. In addition, as the findings of this study show variation in terms of “pain experiences,” “times of the day,” and use of treatments across countries, these real-life expressions of headache and migraine sufferers cannot be extrapolated globally. Therefore, further research conducting similar infodemiological studies in other geographical regions is needed, which will generate extensive generalizable data and, in return, avoid reductionism.
Social media listening has proven to be a powerful source of knowledge for headache and migraine research. The use of health-related social media is a growing and constantly updating source of real-world data. The perspectives generated from analyzing social media may help in conveying the unmet needs of sufferers in real time, which would help provide a comprehensive understanding of the disease impact and outcomes, including self-medication therapeutic solutions used, which otherwise is not possible to capture in traditional sources of real-world data. Outputs from health-related social media listening studies can help address future research questions and set up research hypothesis.
This study provided a robust understanding of how and when sufferers talk about their headaches or migraines in Japan, Germany, and France. The web audiences were found to be younger; therefore, younger sufferers should be considered while addressing headache sufferers on the web versus offline. This study highlighted country-specific differences. When it comes to specific details on the symptoms of headache and migraine, or times of the day, sufferers from Japan spoke the least, whereas those from Germany spoke the most. Sufferers from Europe provided more details about when their headaches were occurring. German sufferers spoke the most about nonpharmaceutical and medicinal treatments used, whereas their French counterparts spoke the most about treatments used.
Keywords and translation.
Most frequently mentioned terminologies related to pain experiences and symptoms. (A) Japan, (B) Germany, and (C) France.
Time of day referenced. (A) Japan, (B) Germany, and (C) France.
Medicinal treatment formats. (A) Japan, (B) Germany, and (C) France. OTC (over-the-counter).
Nonpharmaceutical treatments. Some nonpharmaceutical treatments were added later manually and were not part of the predefined list. (A) Japan, (B) Germany, and (C) France.
The study was performed by PULSAR Agency, London, UK. Medical writing support for this manuscript was provided by Shweta Vadnerkar and Swati Bhandari, Sanofi. The study, as well as medical writing and editorial support, was funded by Sanofi.
Qualified researchers may request access to data and study-related documents. Further details on Sanofi’s data sharing criteria, eligible studies, and process for requesting access can be found at Vivli [
PG reports, over the last 36 months, specifically with regard to this submission, consulting fees from Sanofi. Unrelated to the current submission, PG reports grants from Eli-Lilly and Company and Celgene; personal fees from Eli-Lilly and Company, Aeon Biopharma, Allergan/Abbvie, Amgen, Biohaven Pharmaceuticals Inc, CoolTech LLC, Dr Reddys, Epalex, GlaxoSmithKline, Impel Neuropharma, Lundbeck, Novartis, Praxis, Satsuma, and Teva Pharmaceuticals; personal fees for advice through Gerson Lehrman Group, Guidepoint, SAI Med Partners, and Vector Metric; fees for educational materials from CME Outfitters, Omnia Education, and WebMD; publishing royalties or fees from Massachusetts Medical Society, Oxford University Press, UptoDate, and Wolters Kluwer; and for medicolegal advice in headache and a patent magnetic stimulation for headache (WO2016090333 A1) assigned to eNeura without fee. LC and CA are current employees of Sanofi and may hold shares and/or stock options in the company. ERdlT reports no conflict of interest.