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Social Media and Myeloproliferative Neoplasms (MPN): Analysis of Advanced Metrics From the First Year of a New Twitter Community: #MPNSM

Current Hematologic Malignancy Reports volume 11, pages 456–461 (2016)Cite this article

Abstract

The social media platform Twitter has provided the hematology/oncology community with unprecedented, novel methods of interpersonal communication and increased ability for the dissemination of important updates in a rapidly moving field. The advent, and subsequent success, of disease-specific Twitter communities have further enabled interested healthcare stakeholders to become quickly organized around a unique set of rare medical conditions, such as hematologic malignancies, that, historically, generally lack large amounts of reliable online information. One example is the Twitter community #MPNSM (myeloproliferative neoplasms on social media), which was started approximately one and half years ago and has served as a recognized venue for discussion among many members of the MPN community, including patients, researchers, providers, and advocacy organizations. This article will focus on understanding the impact of the founding of this community via the analysis of advanced Twitter metrics of user experience, from the first year of use for this novel healthcare hashtag.

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References

  1. Abernethy AP, Grubbs SS. Managing cumulative expectations in oncology: challenges and potential solutions. Am Soc Clin Oncol Educ Book. 2014;e140-144. doi:10.14694/EdBook_AM.2014.34.e140

  2. Savage N. Scientists in the twitterverse. Cell. 2015;162(2):233–4.

    CAS  Article  PubMed  Google Scholar 

  3. Thompson MA. Using social media to learn and communicate: it is not about the tweet. Am Soc Clin Oncol Educ Book. 2015;206–211.

  4. Borgmann H, Loeb S, Salem J, et al. Activity, content, contributors, and influencers of the twitter discussion on urologic oncology. Urol Oncol. 2016.

  5. 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 sMed Internet Res. 2015;17(7):e188.

    Article  Google Scholar 

  6. Thompson MA, Majhail NS, Wood WA, Perales MA, Chaboissier M. Social media and the practicing hematologist: twitter 101 for the busy healthcare provider. Curr Hematol Malig Rep. 2015;10(4):405–12.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Salem J, Borgmann H, Murphy DG. Integrating social media into urologic health care: what can we learn from other disciplines? Curr Urol Rep. 2016;17(2):13.

    Article  PubMed  Google Scholar 

  8. Park S, Oh HK, Park G, et al. The source and credibility of colorectal cancer information on twitter. Medicine. 2016;95(7):e2775.

    Article  PubMed  PubMed Central  Google Scholar 

  9. 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 

  10. Verstovsek S, Komrokji RS. Novel and emerging therapies for the treatment of polycythemia vera. Expert Rev Hematol. 2015;8(1):101–13.

    CAS  Article  PubMed  Google Scholar 

  11. Geyer HL, Mesa RA. Emerging drugs for the treatment of myelofibrosis. Expert Opin Emerg Drugs. 2015;20(4):663–78.

    CAS  Article  PubMed  Google Scholar 

  12. Stein BL, Gotlib J, Arcasoy M, et al. Historical views, conventional approaches, and evolving management strategies for myeloproliferative neoplasms. J Natl Compr Canc Netw. 2015;13(4):424–34.

    CAS  PubMed  Google Scholar 

  13. Tefferi A, Barbui T. Polycythemia vera and essential thrombocythemia: 2015 update on diagnosis, risk-stratification and management. Am J Hematol. 2015;90(2):162–73.

    CAS  Article  PubMed  Google Scholar 

  14. Pemmaraju N, Gupta V, Mesa R, Thompson MA. Social media and myeloproliferative neoplasms (mpn)-focus on twitter and the development of a disease-specific community: #MPNSM. Curr Hematol Malig Rep. 2015.

  15. 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;33:6520.

    Google Scholar 

  16. Sedrak MS, Cohen RB, Merchant RM, Schapira MM. Cancer Communication in the Social Media Age. JAMA Oncol. 2016;2(6):822-3.

  17. Perales MA, Drake EK, Pemmaraju N, Wood WA. Social media and the adolescent and young adult (aya) patient with cancer. Curr Hematol Malig Rep. 2016.

  18. Thompson MA. Social media in clinical trials. Am Soc Clin Oncol Educ Book. 2014; e101-105. doi:10.14694/EdBook_AM.2014.34.e101

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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, and the founders and members of Symplur, and the Healthcare Hashtags Project for their continued analysis and support.

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Affiliations

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

    Naveen Pemmaraju

  2. Symplur LLC, Los Angeles, CA, USA

    Audun Utengen

  3. The Elizabeth and Tony Comper MPN Program,-Princess Margaret Cancer Center, Toronto, ON, Canada

    Vikas Gupta

  4. CIC (Clinical Investigations Center, INSERM CIC 1427) Hôpital Saint-Louis & Université Paris Diderot, 1, Avenue Claude Vellefaux, 75010, Paris, France

    Jean-Jacques Kiladjian

  5. Division of Hematology & Medical Oncology, Mayo Clinic in Arizona, Scottsdale, AZ, USA

    Ruben Mesa

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

    Michael A. Thompson

Authors
  1. Naveen Pemmaraju
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  2. Audun Utengen
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  3. Vikas Gupta
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  4. Jean-Jacques Kiladjian
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  5. Ruben Mesa
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  6. Michael A. Thompson
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Corresponding author

Correspondence to Naveen Pemmaraju.

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Conflict of Interest

Naveen Pemmaraju reports Honorarium/Consulting and/or Research and Clinical trial support: Novartis, LFB, Incyte, Stemline, Cellectis.

Vikas Gupta received research grants from Novartis, Incyte, Gilead, and Promedior through his institution; served on scientific advisory board of Novartis, Incyte and received honorarium from Novartis/Incyte.

Audun Utengen is the Co-founder of Symplur.

Michael A. Thompson has been on Advisory Boards for: AIM Specialty Health, BMS, Celgene, Doximity, MDRing, Takeda, VIA Oncology, and Xconomy. Dr. Thompson owns stock in Doximity.

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

Jean-Jacques Kiladjian reports grants from Novartis and AOP Orphan and personal fees from Novartis, Incyte, AOP Orphan, and Shire.

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.

Additional information

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

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Pemmaraju, N., Utengen, A., Gupta, V. et al. Social Media and Myeloproliferative Neoplasms (MPN): Analysis of Advanced Metrics From the First Year of a New Twitter Community: #MPNSM. Curr Hematol Malig Rep 11, 456–461 (2016). https://doi.org/10.1007/s11899-016-0341-2

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  • DOI: https://doi.org/10.1007/s11899-016-0341-2

Keywords

  • Social media
  • Twitter
  • Myeloproliferative neoplasm
  • Disease-specific hashtag
  • Myelofibrosis
  • Polycythemia vera