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What Are IBD Patients Talking About on Twitter?

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ICT for Health, Accessibility and Wellbeing (IHAW 2021)

Part of the book series: Communications in Computer and Information Science ((CCIS,volume 1538))

Abstract

In recent years, social networking sites and online communities have served as alternate information sources for patients, who use social media to share health and treatment information, learn from each other’s experiences, and provide social support. This research aimed to investigate what patients with Inflammatory Bowel Disease (IBD) are talking about on Twitter and to learn from the experimental knowledge of living with the disease they share online. We collected tweets of 337 IBD patients who openly tweeted about their disease on Twitter and used the Natural Language Understanding (NLU) module by IBM Cloud to apply category classification and keywords extraction to their tweets. To evaluate the results, we suggested a method for sampling the general population of Twitter users and forming a control group. We found statistically significant differences between the thematic segmentations of the patients and those of random Twitter users. We identified keywords that patients frequently use in the contexts of health, fitness, or nutrition, and obtained their sentiment. The results of the research suggest that the personal information shared by IBD patients on Twitter can be used to understand better the disease and how it affects patients’ lives. By leveraging posts describing patients’ daily activities and how they influence their wellbeing, we can derive complementary knowledge about the disease that is based on the wisdom of the crowd.

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References

  1. Devlen, J., Beusterien, K., Yen, L., Ahmed, A., Cheifetz, A.S., Moss, A.C.: The burden of inflammatory bowel disease: a patient-reported qualitative analysis and development of a conceptual model. Inflamm. Bowel. Dis. 20(3), 545–552 (2014)

    Article  Google Scholar 

  2. Brydolf, M., Segesten, K.: Living with ulcerative colitis: experiences of adolescents and young adults. J. Adv. Nurs. 23(1), 39–47 (1996)

    Article  Google Scholar 

  3. Hall, N.J., Rubin, G.P., Dougall, A., Hungin, A., Neely, J.: The fight for ‘health-related normality’: a qualitative study of the experiences of individuals living with established inflammatory bowel disease (IBD). J. Health Psychol. 10(3), 443–455 (2005)

    Article  Google Scholar 

  4. Norton, B., Thomas, R., Lomax, K.G., Dudley-Brown, S.: Patient perspectives on the impact of Crohn’s disease: results from group interviews. Patient Prefer Adherence 6, 509–520 (2012)

    Article  Google Scholar 

  5. Docs ICA: Natural Language Understanding. Natural Language Understanding (2020)

    Google Scholar 

  6. De Choudhury, M., Morris, M.R., White, R.W.: Seeking and sharing health information online: comparing search engines and social media. In: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (2014)

    Google Scholar 

  7. Chulis, K.: Data mining Twitter for cancer, diabetes, and asthma insights. Purdue University (2016)

    Google Scholar 

  8. Heaivilin, N., Gerbert, B., Page, J.E., Gibbs, J.L.: Public health surveillance of dental pain via Twitter. J. Dent. Res. 90(9), 1047–1051 (2011)

    Article  Google Scholar 

  9. Tsuya, A., Sugawara, Y., Tanaka, A., Narimatsu, H.: Do cancer patients tweet? Examining the twitter use of cancer patients in Japan. J. Med. Internet Res 16(5), e137 (2014)

    Article  Google Scholar 

  10. Adrover, C., Bodnar, T., Salathé, M.: Targeting HIV-related medication side effects and sentiment using twitter data. arXiv preprint arXiv:1404.3610 (2014)

  11. Sioula-Georgoulea, I.: Approaching Twitter sociologically: a case study of the public humiliation of HIV-positive women. Επιθεώρηση Κοινωνικών Ερευνών 144(144), 103–128 (2015)

    Article  Google Scholar 

  12. Odlum, M., Yoon, S.: HIV/AIDS and the millennium development goals: a public sentiment analysis of world AIDS day twitter chat. Int. J. AIDS Res. 3(9), 129–132 (2016)

    Google Scholar 

  13. Karisani, P., Agichtein, E.: Did you really just have a heart attack? Towards robust detection of personal health mentions in social media. In: Proceedings of the 2018 World Wide Web Conference (2018)

    Google Scholar 

  14. Yin, Z., Fabbri, D., Rosenbloom, S.T., Malin, B.: A scalable framework to detect personal health mentions on Twitter. J. Med. Internet Res. 17(6), e4305 (2015)

    Article  Google Scholar 

  15. Jahanbin, K., Rahmanian, V.: Using Twitter and web news mining to predict COVID-19 outbreak. Asian Pac. J. Trop. Med. 13(8), 378 (2020)

    Article  Google Scholar 

  16. Lopreite, M., Panzarasa, P., Puliga, M., Riccaboni, M.: Early warnings of COVID-19 outbreaks across Europe from social media. Sci. Rep. 11(1), 1–7 (2021)

    Article  Google Scholar 

  17. Gabarron, E., Dorronzoro, E., Rivera-Romero, O., Wynn, R.: Diabetes on Twitter: a sentiment analysis. J. Diabetes Sci. Technol. 13(3), 439–444 (2019)

    Article  Google Scholar 

  18. Beguerisse-Díaz, M., McLennan, A.K., Garduño-Hernández, G., Barahona, M., Ulijaszek, S.J.: The ‘who’ and ‘what’ of# diabetes on Twitter. Digit. Health 3, 2055207616688841 (2017)

    Google Scholar 

  19. Sugawara, Y., Narimatsu, H., Hozawa, A., Shao, L., Otani, K., Fukao, A.: Cancer patients on Twitter: a novel patient community on social media. BMC. Res. Notes 5(1), 1–9 (2012). https://doi.org/10.1186/1756-0500-5-699

    Article  Google Scholar 

  20. Kaplan, G.G.: The global burden of IBD: from 2015 to 2025. Nat. Rev. Gastroenterol. Hepatol. 12(12), 720–727 (2015)

    Article  Google Scholar 

  21. Loftus, E.V.: Clinical epidemiology of inflammatory bowel disease: incidence, prevalence, and environmental influences. Gastroenterology 126(6), 1504–1517 (2004)

    Article  Google Scholar 

  22. Roccetti, M., Marfia, G., Salomoni, P., Prandi, C., Zagari, R.M., Kengni, F.L.G., et al.: Attitudes of Crohn’s disease patients: infodemiology case study and sentiment analysis of Facebook and Twitter posts. JMIR Public Health and Surveill. 3(3), e51 (2017)

    Article  Google Scholar 

  23. Trivedi, I., Keefer, L.: The emerging adult with inflammatory bowel disease: challenges and recommendations for the adult gastroenterologist. Gastroenterol. Res. Pract. 2015, 260807 (2015)

    Article  Google Scholar 

  24. Rubin, D.T., Dubinsky, M.C., Panaccione, R., Siegel, C.A., Binion, D.G., Kane, S.V., et al.: The impact of ulcerative colitis on patients’ lives compared to other chronic diseases: a patient survey. Dig. Dis. Sci. 55(4), 1044–1052 (2010)

    Article  Google Scholar 

  25. Frohlich, D.O.: The social construction of inflammatory bowel disease using social media technologies. Health Commun. 31(11), 1412–1420 (2016)

    Article  Google Scholar 

  26. Kemp, K., Griffiths, J., Lovell, K.: Understanding the health and social care needs of people living with IBD: a meta-synthesis of the evidence. World J. Gastroenterol. 18(43), 6240–6249 (2012)

    Article  Google Scholar 

  27. Khan, A., Silverman, A., Rowe, A, Rowe, S., Tick, M., Testa, S., et al.: Who is saying what about Inflammatory Bowel Disease on Twitter? (2018)

    Google Scholar 

  28. Rowe, A., Rowe, S., Silverman, A., Borum, M.L.: P024 Crohn’s disease messaging on twitter: who’s talking? Gastroenterology 154(1), S13–S14 (2018)

    Article  Google Scholar 

  29. Roccetti, M., Casari, A., Marfia, G.: Inside chronic autoimmune disease communities: a social networks perspective to Crohn’s patient behavior and medical information. In: 2015 IEEE/ACM International Conference on Advances in Social Networks Analysis and Mining (ASONAM). IEEE (2015)

    Google Scholar 

  30. Frohlich, D.O., Zmyslinski-Seelig, A.N.: How uncover ostomy challenges ostomy stigma, and encourages others to do the same. New Media Soc. 18(2), 220–238 (2016)

    Article  Google Scholar 

  31. Becker, K.L.: Cyberhugs: creating a voice for chronic pain sufferers through technology. Cyberpsychol. Behav. Soc. Netw. 16(2), 123–126 (2013)

    Article  Google Scholar 

  32. Wiese, J., Kelley, P.G., Cranor, L.F., Dabbish, L., Hong, J.I., Zimmerman, J.: Are you close with me? Are you nearby?: investigating social groups, closeness, and willingness to share. In: Proceedings of the 13th International Conference on Ubiquitous Computing. ACM (2011)

    Google Scholar 

  33. Paek, H., Hove, T., Ju Jeong, H., Kim, M.: Peer or expert? The persuasive impact of YouTube public service announcement producers. Int. J. Advert. 30(1), 161–188 (2011)

    Article  Google Scholar 

  34. Lin, W., Zhang, X., Song, H., Omori, K.: Health information seeking in the Web 2.0 age: trust in social media, uncertainty reduction, and self-disclosure. Comput. Hum. Behav. 56, 289–294 (2016)

    Article  Google Scholar 

  35. Gloor, P.A., Maddali, H.T., Margolis, P.A.: Comparing online community structure of patients of chronic diseases. Int. J. Organ. Des. Eng. 4(1–2), 113–136 (2016)

    Google Scholar 

  36. Pérez-Pérez, M., Pérez-Rodríguez, G., Fdez-Riverola, F., Lourenço, A.: Using twitter to understand the human bowel disease community: exploratory analysis of key topics. J. Med. Internet Res. 21(8), e12610 (2019)

    Article  Google Scholar 

  37. Cohen, E.R., Spiegel, B.M., van Oijen, M.G.: Tu1068 Twitter offers insight into health related quality of life (HRQoL) in ulcerative colitis. Gastroenterology 144(5), S-751-S-752 (2013)

    Article  Google Scholar 

  38. Stemmer, M., Ravid, G., Parmet, Y.: A framework for identifying patients on twitter and learning from their personal experience. ECIS (2020)

    Google Scholar 

  39. Twitter I. Sampled stream (2021). https://developer.twitter.com/en/docs/twitter-api/tweets/sampled-stream/api-reference/get-tweets-sample-stream

  40. Maier, M.: Dirichlet Regression in R. Version 0.4-0.R Foundation for Statistical Computing, Vienna, Austria (2012)

    Google Scholar 

  41. Maier, M.J.: DirichletReg: Dirichlet regression for compositional data in R (2014)

    Google Scholar 

  42. Maier, M.J., Maier, M.M.J.: Package ‘DirichletReg’ (2015)

    Google Scholar 

Download references

Acknowledgements

This study was supported by a grant of the ERA-Net Cofund HDHL-INTIMIC (INtesTInal MICrobiomics) under the umbrella of Joint Programming Initiative “A healthy diet for a healthy life”.

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Authors and Affiliations

  1. Ben-Gurion University of the Negev, P.O.B. 653, 8410501, Beer-Sheva, Israel

    Maya Stemmer, Yisrael Parmet & Gilad Ravid

Authors
  1. Maya Stemmer
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  2. Yisrael Parmet
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  3. Gilad Ravid
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Corresponding author

Correspondence to Maya Stemmer .

Editor information

Editors and Affiliations

  1. Université de Rouen-Normandie, Rouen, France

    Edwige Pissaloux

  2. University of Cyprus, Nicosia, Cyprus

    George Angelos Papadopoulos

  3. Frederick University, Nicosia, Cyprus

    Achilleas Achilleos

  4. Universidad Panamericana, Aguascalientes, Mexico

    Ramiro Velázquez

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Stemmer, M., Parmet, Y., Ravid, G. (2021). What Are IBD Patients Talking About on Twitter?. In: Pissaloux, E., Papadopoulos, G.A., Achilleos, A., Velázquez, R. (eds) ICT for Health, Accessibility and Wellbeing. IHAW 2021. Communications in Computer and Information Science, vol 1538. Springer, Cham. https://doi.org/10.1007/978-3-030-94209-0_18

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  • DOI: https://doi.org/10.1007/978-3-030-94209-0_18

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-94208-3

  • Online ISBN: 978-3-030-94209-0

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