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Social Media and Myeloproliferative Neoplasms (MPN)—Focus on Twitter and the Development of a Disease-specific Community: #MPNSM

  • Social Media Impact of Hematologic Malignancies (N Pemmaraju, Section Editor)
  • Published:
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Abstract

The advent of social media has led to the ability for individuals all over the world to communicate with each other, in real time, about mutual topics of interest in an unprecedented manner. Recently, the use of social media has increased among people interested in healthcare and medical research, particularly in the field of hematology and oncology, a field which frequently experiences rapid shifts of information and novel, practice-changing discoveries. Among the many social media platforms available to cancer patients and providers, one platform in particular, Twitter, has become the focus for the creation of disease-specific communities, especially for those interested in, affected by, or those who perform research in the fields of rare cancers, which historically have had a dearth of reliable information available. This article will focus on the initiation and progress of one such Twitter hematology/oncology community, #mpnsm, which was originally created for the purpose of serving as a venue for improving the interaction among patients, providers, researchers, and organizations with interest in the myeloproliferative neoplasms (MPNs) and to further the availability of reliable up-to-date analysis; relevant expert commentary; and readily usable information for patients, providers, and other groups interested in this field.

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References

  1. Savage N. Scientists in the Twitterverse. Cell. 2015;162:233–4.

    Article  CAS  PubMed  Google Scholar 

  2. Baptist AP, Thompson M, Grossman KS, Mohammed L, Sy A, Sanders GM. Social media, text messaging, and email-preferences of asthma patients between 12 and 40 years old. J Asthma. 2011;48:824–30.

    Article  PubMed  Google Scholar 

  3. Thompson MA, Younes A, Miller RS. Using social media in oncology for education and patient engagement. Oncology (Williston Park). 2012;26:782, 4–5–91.

    Google Scholar 

  4. Hawn C. Take two aspirin and tweet me in the morning: how Twitter, Facebook, and other social media are reshaping health care. Health Aff. 2009;28:361–8.

    Article  Google Scholar 

  5. Scanfeld D, Scanfeld V, Larson EL. Dissemination of health information through social networks: twitter and antibiotics. Am J Infect Control. 2010;38:182–8.

    Article  PubMed Central  PubMed  Google Scholar 

  6. Attai DJ, Cowher MS, Al-Hamadani M, Schoger JM, Staley AC, Landercasper J. Twitter social media is an effective tool for breast cancer patient education and support: patient-reported outcomes by survey. J Med Internet Res. 2015;17:e188.

    Article  PubMed  Google Scholar 

  7. Chew C, Eysenbach G. Pandemics in the age of Twitter: content analysis of Tweets during the 2009 H1N1 outbreak. PLoS One. 2010;5:e14118.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  8. Lazard AJ, Scheinfeld E, Bernhardt JM, Wilcox GB, Suran M. Detecting themes of public concern: a text mining analysis of the centers for disease control and prevention’s Ebola live Twitter chat. Am J Infect Control. 2015;doi: 10.1016/j.ajic.2015.05.025.

  9. Chaudhry A, Glode LM, Gillman M, Miller RS. Trends in twitter use by physicians at the American Society of Clinical Oncology annual meeting, 2010 and 2011. J Oncol Pract. 2012;8:173–8.

    Article  PubMed Central  PubMed  Google Scholar 

  10. Nwosu AC, Debattista M, Rooney C, Mason S. Social media and palliative medicine: a retrospective 2-year analysis of global Twitter data to evaluate the use of technology to communicate about issues at the end of life. BMJ Support Palliat Care. 2015;5:207–12.

    Article  PubMed  Google Scholar 

  11. Vardiman JW, Thiele J, Arber DA, et al. The 2008 revision of the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia: rationale and important changes. Blood. 2009;114:937–51.

    Article  CAS  PubMed  Google Scholar 

  12. Dameshek W. Some speculations on the myeloproliferative syndromes. Blood. 1951;6:372–5.

    CAS  PubMed  Google Scholar 

  13. O’Brien SG, Guilhot F, Larson RA, et al. Imatinib compared with interferon and low-dose cytarabine for newly diagnosed chronic-phase chronic myeloid leukemia. N Engl J Med. 2003;348:994–1004.

    Article  PubMed  Google Scholar 

  14. Kantarjian H, O’Brien S, Jabbour E, et al. Improved survival in chronic myeloid leukemia since the introduction of imatinib therapy: a single-institution historical experience. Blood. 2012;119:1981–7.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  15. Pemmaraju N, Moliterno AR. From Philadelphia-negative to JAK2-Positive: effect of genetic discovery on risk stratification and management. Am Soc Clin Oncol Educ Book. 2015;35:139–45.

    Article  Google Scholar 

  16. Baxter EJ, Scott LM, Campbell PJ, et al. Acquired mutation of the tyrosine kinase JAK2 in human myeloproliferative disorders. Lancet. 2005;365:1054–61.

    Article  CAS  PubMed  Google Scholar 

  17. Campbell PJ, Scott LM, Buck G, et al. Definition of subtypes of essential thrombocythaemia and relation to polycythaemia vera based on JAK2 V617F mutation status: a prospective study. Lancet. 2005;366:1945–53.

    Article  CAS  PubMed  Google Scholar 

  18. Levine RL, Wadleigh M, Cools J, et al. Activating mutation in the tyrosine kinase JAK2 in polycythemia vera, essential thrombocythemia, and myeloid metaplasia with myelofibrosis. Cancer Cell. 2005;7:387–97.

    Article  CAS  PubMed  Google Scholar 

  19. Kralovics R, Passamonti F, Buser AS, et al. A gain-of-function mutation of JAK2 in myeloproliferative disorders. N Engl J Med. 2005;352:1779–90.

    Article  CAS  PubMed  Google Scholar 

  20. Pikman Y, Lee BH, Mercher T, et al. MPLW515L is a novel somatic activating mutation in myelofibrosis with myeloid metaplasia. PLoS Med. 2006;3:e270.

    Article  PubMed Central  PubMed  Google Scholar 

  21. Nangalia J, Massie CE, Baxter EJ, et al. Somatic CALR mutations in myeloproliferative neoplasms with nonmutated JAK2. N Engl J Med. 2013;369:2391–405.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  22. Klampfl T, Gisslinger H, Harutyunyan AS, et al. Somatic mutations of calreticulin in myeloproliferative neoplasms. N Engl J Med. 2013;369:2379–90.

    Article  CAS  PubMed  Google Scholar 

  23. Cervantes F, Dupriez B, Pereira A, et al. New prognostic scoring system for primary myelofibrosis based on a study of the international working group for myelofibrosis research and treatment. Blood. 2009;113:2895–901.

    Article  CAS  PubMed  Google Scholar 

  24. Verstovsek S, Mesa RA, Gotlib J, et al. A double-blind, placebo-controlled trial of ruxolitinib for myelofibrosis. N Engl J Med. 2012;366:799–807.

    Article  CAS  PubMed  Google Scholar 

  25. Harrison C, Kiladjian JJ, Al-Ali HK, et al. JAK inhibition with ruxolitinib versus best available therapy for myelofibrosis. N Engl J Med. 2012;366:787–98.

    Article  CAS  PubMed  Google Scholar 

  26. Mesa RA, Niblack J, Wadleigh M, et al. The burden of fatigue and quality of life in myeloproliferative disorders (MPDs): an international Internet-based survey of 1179 MPD patients. Cancer. 2007;109:68–76.

    Article  PubMed  Google Scholar 

  27. Geyer HL, Mesa RA. Therapy for myeloproliferative neoplasms: when, which agent, and how? Blood. 2014;124:3529–37.

    Article  CAS  PubMed  Google Scholar 

  28. Scherber R, Dueck AC, Johansson P, et al. The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF): international prospective validation and reliability trial in 402 patients. Blood. 2011;118:401–8.

    Article  CAS  PubMed  Google Scholar 

  29. Emanuel RM, Dueck AC, Geyer HL, et al. Myeloproliferative neoplasm (MPN) symptom assessment form total symptom score: prospective international assessment of an abbreviated symptom burden scoring system among patients with MPNs. J Clin Oncol. 2012;30:4098–103.

    Article  PubMed  Google Scholar 

  30. Cartledge P, Miller M, Phillips B. The use of social-networking sites in medical education. Med Teach. 2013;35:847–57.

    Article  PubMed  Google Scholar 

  31. McGowan BS, Wasko M, Vartabedian BS, Miller RS, Freiherr DD, Abdolrasulnia M. Understanding the factors that influence the adoption and meaningful use of social media by physicians to share medical information. J Med Internet Res. 2012;14:e117.

    Article  PubMed Central  PubMed  Google Scholar 

  32. Wilkinson SE, Basto MY, Perovic G, Lawrentschuk N, Murphy DG. The social media revolution is changing the conference experience: analytics and trends from eight international meetings. BJU Int. 2015;115:839–46.

    Article  PubMed  Google Scholar 

  33. Katz MS, Utengen A, Anderson PF, Thompson MA, Fisch M, Johnston C. Disease-specific hashtags for online communication about cancer care. J Clin Oncol. 2015;33:suppl abstr 6520.

    Google Scholar 

  34. Bahkali S, Almaiman A, Bahkali A, Almaiman S, Househ M, Alsurimi K. The role of social media in promoting women’s health education in Saudi Arabia. Stud Health Technol Inform. 2015;213:259–62.

    PubMed  Google Scholar 

  35. West HJ, Debronkart D, Demetri GD. A new model: physician-patient collaboration in online communities and the clinical practice of oncology. Am Soc Clin Oncol Educ Book. 2012:443–8. doi:10.14694/EdBook_AM.2012.32.443.

  36. Sherbino J, Arora VM, Van Melle E, Rogers R, Frank JR, Holmboe ES. Criteria for social media-based scholarship in health professions education. Postgrad Med J. 2015; doi:10.1136/postgradmedj-2015-133300.

  37. Kitching F, Winbolt M, MacPhail A, Ibrahim JE. Web-based social media for professional medical education: perspectives of senior stakeholders in the nursing home sector. Nurse Educ Today. 2015; doi:10.1016/j.nedt.2015.05.013.

  38. Jalali A, Sherbino J, Frank J, Sutherland S. Social media and medical education: exploring the potential of Twitter as a learning tool. Int Rev Psychiatry. 2015;27:140–6.

    Article  PubMed  Google Scholar 

  39. Chan TM, Thoma B, Lin M. Creating, curating, and sharing online faculty development resources: the medical education in cases series experience. Acad Med. 2015;90:785–9.

    Article  PubMed  Google Scholar 

  40. Thompson MA. Social media in clinical trials. Am Soc Clin Oncol Educ Book. 2014:e101-5. doi:10.14694/EdBook_AM.2014.34.e101.

  41. Bell JA, Balneaves LG. Cancer patient decision making related to clinical trial participation: an integrative review with implications for patients’ relational autonomy. Support Care Cancer. 2015;23:1169–96.

    Article  PubMed  Google Scholar 

  42. Anderson LA, James G, Duncombe AS, et al. Myeloproliferative neoplasm patient symptom burden and quality of life: evidence of significant impairment compared to controls. Am J Hematol. 2015; doi:10.1002/ajh.24098.

  43. Mesa RA, Scherber RM, Geyer HL. Reducing symptom burden in patients with myeloproliferative neoplasms in the era of Janus kinase inhibitors. Leuk Lymphoma. 2015;56:1989–99.

    Article  CAS  PubMed  Google Scholar 

  44. Scherber RM, Geyer HL, Mesa RA. Quality of life in MPN comes of age as a therapeutic target. Curr Hematol Malig Rep. 2014;9:324–30.

    Article  PubMed  Google Scholar 

  45. Maxson JE, Gotlib J, Pollyea DA, et al. Oncogenic CSF3R mutations in chronic neutrophilic leukemia and atypical CML. N Engl J Med. 2013;368:1781–90.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  46. Piazza R, Valletta S, Winkelmann N, et al. Recurrent SETBP1 mutations in atypical chronic myeloid leukemia. Nat Genet. 2013;45:18–24.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  47. Meggendorfer M, Bacher U, Alpermann T, et al. SETBP1 mutations occur in 9% of MDS/MPN and in 4% of MPN cases and are strongly associated with atypical CML, monosomy 7, isochromosome i(17)(q10), ASXL1 and CBL mutations. Leukemia. 2013;27:1852–60.

    Article  CAS  PubMed  Google Scholar 

  48. Gambacorti-Passerini CB, Donadoni C, Parmiani A, et al. Recurrent ETNK1 mutations in atypical chronic myeloid leukemia. Blood. 2015;125:499–503.

    Article  CAS  PubMed  Google Scholar 

  49. Komrokji RS, Seymour JF, Roberts AW, et al. Results of a phase 2 study of pacritinib (SB1518), a JAK2/JAK2(V617F) inhibitor, in patients with myelofibrosis. Blood. 2015;125:2649–55.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  50. Vannucchi AM, Kiladjian JJ, Griesshammer M, et al. Ruxolitinib versus standard therapy for the treatment of polycythemia vera. N Engl J Med. 2015;372:426–35.

    Article  PubMed Central  PubMed  Google Scholar 

  51. Tefferi A, Lasho TL, Begna KH, et al. A pilot study of the telomerase inhibitor imetelstat for myelofibrosis. N Engl J Med. 2015;373:908–19.

    Article  PubMed  Google Scholar 

  52. Baerlocher GM, Oppliger Leibundgut E, Ottmann OG, et al. Telomerase inhibitor imetelstat in patients with essential thrombocythemia. N Engl J Med. 2015;373:920–8.

    Article  PubMed  Google Scholar 

  53. Armanios M, Greider CW. Treating myeloproliferation—on target or off? N Engl J Med. 2015;373:965–6.

    Article  PubMed  Google Scholar 

  54. Dizon DS, Graham D, Thompson MA, et al. Practical guidance: the use of social media in oncology practice. J Oncol Pract. 2012;8:e114–24.

    Article  PubMed Central  PubMed  Google Scholar 

  55. Thompson MA. Using social media to learn and communicate: it is not about the tweet. Am Soc Clin Oncol Educ Book. 2015:206–11. doi:10.14694/EdBook_AM.2015.35.206.

  56. Patel R, Chang T, Greysen SR, Chopra V. Social media use in chronic disease: a systematic review and novel taxonomy. Am J Med. 2015; doi:10.1016/j.amjmed.2015.06.015.

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Acknowledgments

This research is supported in part by the MD Anderson Cancer Center Support Grant P30 CA016672. The authors thank Dr. Matthew Katz and the creators of the Cancer Ontology Tag (CTO) program for their example and inspiration, the founders and members of Symplur.com, and the Healthcare Hashtags Project for their continued analysis and support.

Compliance with Ethics Guidance

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Conflict of Interest

Naveen Pemmaraju reports honorarium/consulting and/or research and clinical trial support: Novartis, LFB, Incyte, Stemline.

Vikas Gupta received research funding through institutions from Novartis, Incyte, Gilead, and Promedior; served on the advisory board for Novartis; and received honorarium/consulting fees from Novartis/Incyte.

Ruben Mesa is the Editor-in-Chief of Current Hematologic Malignancy Reports.

Michael A. Thompson declares no potential conflicts of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

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Authors and Affiliations

  1. Department of Leukemia, The University of Texas M.D. Anderson Cancer Center, Unit 428, PO BOX 301402, Houston, 77230-1402, TX, USA

    Naveen Pemmaraju

  2. Medical Oncology and Hematology, Princess Margaret Cancer Center, Toronto, ON, Canada

    Vikas Gupta

  3. Division of Hematology and Medical Oncology, Mayo Clinic in Arizona, Scottsdale, AZ, USA

    Ruben Mesa

  4. Aurora Research Institute, Aurora Health Care, Milwaukee, WI, USA

    Michael A. Thompson

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  1. Naveen Pemmaraju
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  2. Vikas Gupta
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Correspondence to Naveen Pemmaraju.

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This article is part of the Topical Collection on Social Media Impact of Hematologic Malignancies

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Pemmaraju, N., Gupta, V., Mesa, R. et al. Social Media and Myeloproliferative Neoplasms (MPN)—Focus on Twitter and the Development of a Disease-specific Community: #MPNSM. Curr Hematol Malig Rep 10, 413–420 (2015). https://doi.org/10.1007/s11899-015-0287-9

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