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Analysis of First-Year Twitter Metrics of a Rare Disease Community for Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) on Social Media: #BPDCN

  • Social Media Impact of Hematologic Malignancies (N Pemmaraju, Section Editor)
  • Published:
Current Hematologic Malignancy Reports Aims and scope Submit manuscript

Abstract

Purpose of Review

The use of Twitter, one of the most commonly engaged social media platforms in the world, is increasing among the general public. Notably, this trend has also been observed among those involved in the healthcare field. With its ability to readily connect diverse groups of stakeholders in a given area of interest, Twitter has become a focal point for those involved in increasing awareness and information exchange in orphan disease fields. Blastic plasmacytoid dendritic cell neoplasm (BPDCN) is a rare, aggressive hematologic malignancy with generally poor long-term outcomes for adult patients and no standard therapeutic guidelines. Coupled with its low incidence rate, the disease has experienced a number of name changes over the past three decades (e.g., blastic NK cell lymphoma, CD4+CD56+ hematodermic tumor), thereby historically resulting in difficulties in its clinico-pathologic diagnosis and treatment approaches. All of these factors have led to a striking gap in terms of accurate information available to patients and the general public. Therefore, there is an urgent need for the development of more venues for the dissemination of information, particularly online, for this rare cancer.

Recent Findings

In this context, we began the Twitter medical community, #BPDCN, over a year ago, to help fill this information void.

Summary

Now, completing its first year of existence, we aimed to analyze the metrics of Twitter use in order to better understand and to describe the characteristics and reach in of #BPDCN, and to determine the feasibility of starting and maintaining a disease-specific hashtag community in a particularly rare cancer.

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Acknowledgements

The authors thank Dr. Matthew Katz and the creators of the Cancer Ontology Tag (CTO) Program for their inspiration, and the founders and members of Symplur, and the Healthcare Hashtags Project for their continued analysis and support.

Funding

This research is supported in part by the MD Anderson Cancer Center Support Grant P30 CA016672.

Author information

Authors and Affiliations

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

    Naveen Pemmaraju

  2. Symplur LLC, California, Los Angeles, USA

    Audun Utengen

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

    Vikas Gupta

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

    Michael A. Thompson

  5. Dana-Farber Cancer Institute, Boston, MA, USA

    Andrew A. Lane

Authors
  1. Naveen Pemmaraju
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  2. Audun Utengen
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  3. Vikas Gupta
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  4. Michael A. Thompson
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  5. Andrew A. Lane
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Contributions

NP, AU, VG, MAT, and AAL collected and analyzed the data, wrote, and approved the final manuscript prior to publication.

Corresponding author

Correspondence to Naveen Pemmaraju.

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Conflict of Interest

Naveen Pemmaraju reports honorarium/consulting and/or research/grant and clinical trial support: Novartis, LFB, Incyte, Stemline, Cellectis, Abbive, Affymetrix, Roche Diagnostics, and SagerStrong Foundation. Dr. Pemmaraju is a section editor for Current Hematologic Malignancy Reports.

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 Co-founder of Symplur.

Michael A. Thompson has been on Advisory Boards for AIM Specialty Health, BMS, Celgene, Doximity, Takeda, and VIA Oncology. MT owns stock in Doximity. He is a peer reviewer for plasma cell dyscraisias for UpToDate and has royalty in UpToDate.

Andrew A. Lane reports Stemline (research support), N-of-one (consulting).

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. Analysis of First-Year Twitter Metrics of a Rare Disease Community for Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) on Social Media: #BPDCN. Curr Hematol Malig Rep 12, 592–597 (2017). https://doi.org/10.1007/s11899-017-0422-x

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  • DOI: https://doi.org/10.1007/s11899-017-0422-x

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