Journal of Clinical Neuroscience xxx (2015) xxx–xxx

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Journal of Clinical Neuroscience journal homepage: www.elsevier.com/locate/jocn

Clinical Study

Wikipedia and neurological disorders Francesco Brigo a,b,⇑,1, Stanley C. Igwe c,1, Raffaele Nardone b,d, Piergiorgio Lochner b,e, Frediano Tezzon b, Willem M. Otte f,g a

Department of Neurological and Movement Sciences, Section of Clinical Neurology, University of Verona, Piazzale L.A. Scuro, 10, Verona 37134, Italy Department of Neurology, Franz Tappeiner Hospital, Merano, Italy c Department of Neuropsychiatry, Federal Teaching Hospital, Abakaliki-Ebonyi State, Nigeria d Department of Neurology, Christian Doppler Clinic, Paracelsus Medical University, Salzburg, Austria e Department of Translational Medicine, University of Piemonte Orientale ‘‘Amedeo Avogadro’’, Novara, Italy f Department of Pediatric Neurology, Brain Center Rudolf Magnus, University Medical Center Utrecht, The Netherlands g Biomedical MR Imaging and Spectroscopy Group, Image Sciences Institute, University Medical Center Utrecht, The Netherlands b

a r t i c l e

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Article history: Received 17 October 2014 Accepted 1 February 2015 Available online xxxx Keywords: Epidemiology Google Infodemiology Internet Neurological disorders Wikipedia

a b s t r a c t Our aim was to evaluate Wikipedia page visits in relation to the most common neurological disorders by determining which factors are related to peaks in Wikipedia searches for these conditions. Millions of people worldwide use the internet daily as a source of health information. Wikipedia is a popular free online encyclopedia used by patients and physicians to search for health-related information. The following Wikipedia articles were considered: Alzheimer’s disease; Amyotrophic lateral sclerosis; Dementia; Epilepsy; Epileptic seizure; Migraine; Multiple sclerosis; Parkinson’s disease; Stroke; Traumatic brain injury. We analyzed information regarding the total article views for 90 days and the rank of these articles among all those available in Wikipedia. We determined the highest search volume peaks to identify possible relation with online news headlines. No relation between incidence or prevalence of neurological disorders and the search volume for the related articles was found. Seven out of 10 neurological conditions showed relations in search volume peaks and news headlines. Six out of these seven peaks were related to news about famous people suffering from neurological disorders, especially those from showbusiness. Identification of discrepancies between disease burden and health seeking behavior on Wikipedia is useful in the planning of public health campaigns. Celebrities who publicly announce their neurological diagnosis might effectively promote awareness programs, increase public knowledge and reduce stigma related to diagnoses of neurological disorders. Ó 2015 Elsevier Ltd. All rights reserved.

1. Introduction Millions of people use the internet daily as a source of health information. The increasing number of online searches conducted using popular web search engines such as Google generates socalled ‘‘big data’’. This data provides information about online health-related behavior. The data dynamics may be very useful as a real-time surveillance method to complement surveillances based on traditional data gathering techniques [1]. Big data analysis has resulted in a new research discipline termed infodemiology which is defined as the study of the determinants and distribution of health information [2]. ⇑ Corresponding author. Tel.: +39 0458124174; fax: +39 0458124873. 1

E-mail address: [email protected] (F. Brigo). These authors have contributed equally to the manuscript.

The mother of big data systems using search-related behavior on the internet is the freely accessible Google Trends service [3]. This service has mainly been used in infectious disease monitoring [4,5]. However, other disciplines have started to utilize this source of information, and interesting examples have recently been provided in the field of neurological disorders [6–11]. The use of big data analysis in the field of neurology is important and timely, considering that neurological disorders are worldwide public health threats. There are multiple gaps in understanding the many issues related to these disorders. Access to reliable big data by means of services such as Google Trends is crucial to obtain more reliable information on this increasing global public health issue and improve our understanding of related behavior. However, the Google Trends service is increasingly being criticized because of its overestimated flu prevalence, to values up to 200 percent greater than actual [12,13]. The reason for this failure

http://dx.doi.org/10.1016/j.jocn.2015.02.006 0967-5868/Ó 2015 Elsevier Ltd. All rights reserved.

Please cite this article in press as: Brigo F et al. Wikipedia and neurological disorders. J Clin Neurosci (2015), http://dx.doi.org/10.1016/j.jocn.2015.02.006

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F. Brigo et al. / Journal of Clinical Neuroscience xxx (2015) xxx–xxx

is not fully understood but has been partly attributed to the fact that Google does not make public the specific search terms it uses as raw data to analyze search queries. The particular algorithm the company uses to convert search frequencies into, for instance, flu prevalence, is also unknown and subject to change. The perceived flaws in the Google Trends service necessitate complementary services to provide similar levels of information but with a higher reliability and transparency. A very good candidate to complement the Google Trends service in analyzing online behavior related to neurological disorders is Wikipedia. A recent study has shown promising results in terms of accuracy based on Wikipedia’s page visiting statistics in the prediction of flu rates [14]. Since its launch in 2001, the free online encyclopedia has become the most popular general reference site on the Internet and it is a popular source of health care information. However, the Wikipedia web search behavior for neurological disorders has not yet been studied. Wikipedia contains approximately thirty million articles which are available in up to 287 languages, including over 4.5 million English articles. With 18 billion page views and nearly 500 million unique visitors per month, the English Wikipedia ranks fifth place in the list of most visited websites globally [15]. Wikipedia offers a wealth of detailed information on an almost limitless range of topics. Consequently it provides a very relevant source of public information in several domains, including health. Furthermore, statistics and trends based on the amount of usage of particular articles make the Wikipedia environment an area of interest for researchers, for instance, to track what topics are ‘trending’ in the public sphere [14]. The aim of this study was to evaluate the Wikipedia page visits in relation to the most common neurological disorders. To that aim, we determined which factors are related to peaks in Wikipedia searches for these conditions. 2. Methods First, we selected the following Wikipedia articles related to the most common neurological disorders worldwide: Alzheimer’s disease; Amyotrophic lateral sclerosis; Dementia; Epilepsy; Epileptic seizure; Migraine; Multiple sclerosis; Parkinson’s disease; Stroke; Traumatic brain injury. The information on article views is available on the Wikimedia Statistics data page (http://en.wikipedia.org/wiki/Wikipedia: Statistics). The data are provided as the number of article views per hour irrespective of the user. We used a freely available online summary tool (http://stats.grok.se) to collect aggregated article views at a day level per page. We retrospectively gathered daily Wikipedia article views for 90 days beginning at the earliest available date, 17 July 2014 through to 16 April 2014. Furthermore, we collected data on the rank of these articles among all those available on Wikipedia. Next, we used Wikipedia Trends to identify the highest peaks in search volume of articles and then the Google Trends service to identify possible relations with news headlines published online. If no peak-related news headlines were found, we searched Google using custom date range and news filters to find news headlines. All searches were conducted on 17 July 2014. 3. Results The data on peak of search volume of articles, rank of these articles among all those available in Wikipedia, and the relation of any peaks in search volumes of Wikipedia articles with news headlines published online related to the neurological disorders of interest are reported in Table 1.

No peak-related news headlines were found for migraine, Alzheimer’s disease and amyotrophic lateral sclerosis.

4. Discussion This study is the first attempt to evaluate web search behavior for Wikipedia articles related to neurological disorders. We failed to find any relation between incidence or prevalence of certain neurological disorders and the search volume for the related Wikipedia article. Paradigmatically, the Wikipedia article search volume devoted to multiple sclerosis (a neurological disorder with a worldwide prevalence ranging from 5 to 100 per 100,000 people) ranks much higher than more common disorders such as migraine, epilepsy and stroke (Table 1) [16]. This finding may in part be due to a referral bias, as multiple sclerosis mostly affects young people who may be more competent at using the internet than older people who are more likely to be affected by other neurological conditions. However, such an explanation is not entirely convincing as regardless of their age, relatives and caregivers of patients with those other neurological disorders may also be acquainted with Wikipedia as a source of health information. The high search volumes of Wikipedia articles devoted to multiple sclerosis might be due to increasing numbers of MRI prescribed for a wide range of neurological symptoms and consequential increases in incidental findings of white matter lesions [17] which are, in most cases, found to be unrelated to multiple sclerosis. But these lesions may be a source of concern for physicians, patients and relatives leading to an increase in internet searches including Wikipedia visits. We found a relation between peaks in search volumes of Wikipedia articles and news headlines for seven out of 10 neurological conditions. Interestingly, six out of these seven peaks in search volumes of Wikipedia articles were temporally related to news about famous people suffering from neurological disorders, especially those from showbusiness. The seventh peak relates to a Wikipedia article devoted to Parkinson’s disease, and was closely related to a news headline about World Parkinson’s Day which is celebrated each year on 11 April. The peak of online searches for Wikipedia articles regarding Parkinson’s disease was observed only in 2011 with no other peak in search volume occurring around that date in the following years. This finding suggests that initiatives such as World Parkinson’s Day may represent only a transitory drive for online searches related to this disorder. It is noteworthy to consider that most celebrities related to peaks of Wikipedia searches are individuals in pop culture, therefore, not all celebrities seem to engender the same amount of related searches. However, this result should be interpreted with caution as news headlines in Google (and Google Trends) may overreport news from showbusiness. This finding is consistent with previous studies in cancer and epilepsy showing that a celebrity diagnosis can significantly influence public health behavior leading to increased public interest in disease diagnosis or prevention [8,11,18–20]. Furthermore, this finding suggests that celebrities who publicly announce their neurological diagnosis might effectively promote awareness programs, increase public knowledge and reduce stigma related to that disorder. In regards to this, the International League Against Epilepsy through its Task Force on Sports and Epilepsy, has created a collection of images of famous sports persons photographed with children or teenagers from around the world [21] for worldwide promotional campaigns to eradicate discrimination against epilepsy. The message is that celebrities have no prejudice against the disorder and that people with epilepsy can achieve their goals, lead a full and active life and engage in sports. According to our study results, celebrities affected by a certain neurological disease

Please cite this article in press as: Brigo F et al. Wikipedia and neurological disorders. J Clin Neurosci (2015), http://dx.doi.org/10.1016/j.jocn.2015.02.006

F. Brigo et al. / Journal of Clinical Neuroscience xxx (2015) xxx–xxx Table 1 Data on rank of neurological disorder Wikipedia articles among all those available online, number of views in a set period, date of peak search volume, and the relation of any peaks in search volumes of Wikipedia articles with news headlines published online and related to the neurological disorders of interest Wikipedia article title

Article Article Date of peak rank views1, n article views

Alzheimer’s disease Amyotrophic lateral sclerosis Dementia

1903

365,737

2098

380,993

26 September NA 2008 23 December 2010 NA

4501

251,703

29 August 2011

Epilepsy

3779

229,663

29 March 2013

Epileptic seizure

NR

100,354

08 January 2009

Migraine Multiple sclerosis

3944 571

227,329 542,907

23 February 2011 22 June 2012

Parkinson’s disease

1559

455,187

15 August 2011

Stroke

2620

296,439

10 April 2013

Traumatic brain injury

NR

86,638

21 March 2009

Peak-related news headline, date reported

Tennessee women’s basketball coach Pat Summitt diagnosed with early onset dementia, 25 August 2011 The rapper Lil’ Wayne recovering in hospital after seizure, 15 March 2013 John Travolta’s son dies of an epileptic seizure, 2 January 2009 NA English Television personality Jack Osbourne diagnosed with multiple sclerosis, 18 June 2012 Robin Williams who was in the early stages of Parkinson’s disease, died of suicide on 11 August 2014 (not peak-related) Margaret Thatcher dies from stroke, 8 April 2013 UK actress Natasha Richardson dies of head injury, 18 March 2009

1 Views between 16 April 2014 and 17 July 2014. NA = not applicable, NR = not reported.

can act as an incentive to check online disease information. Such triggers might be very useful in increasing public interest towards epilepsy. Similar initiatives might likewise be undertaken by other neurological societies to promote awareness programs and increase public knowledge. This study has some limitations. Our search was conducted using English terms so that the findings are likely only to reflect online behavior of English speaking users. Secondly, Wikipedia is

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probably less used by lay people than the Google main index and its use requires some informatics skills or at least the availability of a computer with an internet connection. Therefore, the available data are affected by non-representative sampling bias. Despite this limitation, our study indicates that discrepancies between disease burden and disease-related information searches on Wikipedia might be useful in the planning of public health campaigns. Conflicts of Interest/Disclosures The authors declare that they have no financial or other conflicts of interest in relation to this research and its publication. References [1] Ginsberg J, Mohebbi MH, Patel RS, et al. Detecting influenza epidemics using search engine query data. Nature 2009;457:1012–4. [2] Eysenbach G. Infodemiology and infoveillance: framework for an emerging set of public health informatics methods to analyze search, communication and publication behavior on the Internet. J Med Internet Res 2009;11:e11. [3] Google Trends, ; 214 [accessed 18.07.14]. [4] Carneiro HA, Mylonakis E. Google trends: a web-based tool for real-time surveillance of disease outbreaks. Clin Infect Dis 2009;49:1557–64. [5] Corley CD, Cook DJ, Mikler AR, et al. Using Web and social media for influenza surveillance. Adv Exp Med Biol 2010;680:559–64. [6] Bragazzi NL. Infodemiology and infoveillance of multiple sclerosis in Italy. Mult Scler Int 2013;2013:924029. [7] Otte WM, van Diessen E, Bell GS, et al. Web-search trends shed light on the nature of lunacy: relationship between moon phases and epilepsy information-seeking behavior. Epilepsy Behav 2013;29:571–3. [8] Brigo F, Igwe SC, Ausserer H, et al. Why do people Google epilepsy? An infodemiological study of online behavior for epilepsy-related search terms. Epilepsy Behav 2014;31:67–70. [9] Brigo F, Ausserer H. A Google fight between seizure and syncope. Seizure 2014;23:86. [10] Brigo F, Tezzon F, Lochner P, et al. Magic Google in my Hand, Who is the Sickest in my Land? Can J Neurol Sci 2014;41:542–4. [11] Brigo F, Lochner P, Tezzon F, et al. Web search behavior for multiple sclerosis: an infodemiological study. Mult Scler Relat Disord 2014;3:440–3. [12] Butler D. When Google got flu wrong. Nature 2013;494:155–6. [13] Lazer D, Kennedy R, King G, et al. Big data. The parable of Google Flu: traps in big data analysis. Science 2014;343:1203–5. [14] McIver DJ, Brownstein JS. Wikipedia usage estimates prevalence of influenzalike illness in the United States in near real-time. PLoS Comput Biol 2014;10:e1003581. [15] Wikipedia, ; 2014 [accessed 18.07.14]. [16] WHO, ; 2004 [accessed 18.07.14]. [17] Chataway J. When confronted by a patient with the radiologically isolated syndrome. Pract Neurol 2010;10:271–7. [18] Chapman S, McLeod K, Wakefield M, et al. Impact of news of celebrity illness on breast cancer screening: Kylie Minogue’s breast cancer diagnosis. Med J Aust 2005;183:247–50. [19] Twine C, Barthelmes L, Gateley CA. Kylie Minogue’s breast cancer: effects on referrals to a rapid access breast clinic in the UK. Breast 2006;15:667–9. [20] MacArthur GJ, Wright M, Beer H, et al. Impact of media reporting of cervical cancer in a UK celebrity on a population-based cervical screening programme. J Med Screen 2011;18:204–9. [21] International League Against Epilepsy (ILAE), Task Force on Sports and Epilepsy, [accessed 18.07.14].

Please cite this article in press as: Brigo F et al. Wikipedia and neurological disorders. J Clin Neurosci (2015), http://dx.doi.org/10.1016/j.jocn.2015.02.006

Wikipedia and neurological disorders.

Our aim was to evaluate Wikipedia page visits in relation to the most common neurological disorders by determining which factors are related to peaks ...
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