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Current Hematologic Malignancy Reports

, Volume 13, Issue 6, pp 570–575 | Cite as

Online and Social Media Resources for Patients with MDS

  • Nour Abuhadra
  • Aziz Nazha
Social Media Impact of Hematologic Malignancies (N Pemmaraju, Section Editor)
Part of the following topical collections:
  1. Topical Collection on Social Media Impact of Hematologic Malignancies

Abstract

Purpose of Review

The number of online resources for patients with MDS is exponentially increasing; this is in large part due to the advent of social media which has introduced multiple avenues for information exchange and communication. Whether this information is targeted towards the patient population or not, the wealth of information online represents a new era of patient engagement in their health care. This review aims to highlight the different online resources being used in the field of MDS.

Recent Findings

Patients with MDS have access to the opinions of thought leaders in the field, advances in research and clinical trials, and the latest updates at national conferences and leading journals through social media.

Summary

Social media is a powerful educational resource for patients with MDS when used conscientiously.

Keywords

MDS Social media Twitter 

Notes

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict 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.

References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. 1.
    Chamseddine AN, Jabbour E, Kantarjian HM, Bohannan ZS, Garcia-Manero G. Unraveling myelodysplastic syndromes: current knowledge and future directions. Curr Oncol Rep. 2015;18:4.  https://doi.org/10.1007/s11912-015-0489-2.CrossRefGoogle Scholar
  2. 2.
    Pemmaraju N. Editorial overview: emerging importance of social media for real-time communication in the modern medical era. Semin Hematol. 2017;54:175–6.CrossRefGoogle Scholar
  3. 3.
    Thompson MA, Majhail NS, Wood WA, Perales M-A, Chaboissier M. Social media and the practicing hematologist: Twitter 101 for the busy healthcare provider. Current Hematologic Malignancy Reports. 2015;10:405–12.CrossRefGoogle Scholar
  4. 4.
    Thompson MA, Ahlstrom J, Dizon DS, Gad Y, Matthews G, Luks HJ, et al. Twitter 101 and beyond: introduction to social media platforms available to practicing hematologist/oncologists. Semin Hematol. 2017;54:177–83.CrossRefGoogle Scholar
  5. 5.
    Roy D, Taylor J, Cheston CC, Flickinger TE, Chisolm MS. Social media: portrait of an emerging tool in medical education. Acad Psychiatry. 2015;40:136–40.CrossRefGoogle Scholar
  6. 6.
    Gholami-Kordkheili F, Wild V, Strech D. The impact of social media on medical professionalism: a systematic qualitative review of challenges and opportunities. J Med Internet Res. 2013;15:e184.  https://doi.org/10.2196/jmir.2708.CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Ow D, Wetherell D, Papa N, Bolton D, Lawrentschuk N (2015) Patients perspectives of accessibility and digital delivery of factual content provided by official medical and surgical specialty society websites: a qualitative assessment. IJMR.  https://doi.org/10.2196/ijmr.3963.
  8. 8.
    Cheston CC, Flickinger TE, Chisolm MS. Social media use in medical education. Acad Med. 2013;88:893–901.CrossRefGoogle Scholar
  9. 9.
    Patel SS, Majhail NS. Twitter use in the hematopoietic cell transplantation community. Curr Hematol Malig Rep. 2018;13:53–8.CrossRefGoogle Scholar
  10. 10.
    Abuhadra N, Majhail NS, Nazha A. Impact of social media for the hematologist/oncologist. Semin Hematol. 2017;54:193–7.CrossRefGoogle Scholar
  11. 11.
    • Katz MS, Utengen A, Anderson PF, Thompson MA, Attai DJ, Johnston C, et al. Disease-specific hashtags for online communication about cancer care. JAMA Oncology. 2016;2:392 Comprehensive summary of disease-specific hashtags that are available online.CrossRefGoogle Scholar
  12. 12.
    Cancer Tag Ontology. In: Symplur. https://www.symplur.com/healthcare-hashtags/ontology/cancer/. Accessed 22 May 2018.
  13. 13.
    Hematology Tag Ontology. In: Symplur. https://www.symplur.com/healthcare-hashtags/ontology/hematology/. Accessed 22 May 2018.
  14. 14.
    Oncology Tag Ontology. In: Symplur. https://www.symplur.com/healthcare-hashtags/ontology/oncology/. Accessed 22 May 2018.
  15. 15.
    Pemmaraju N, Utengen A, Gupta V, Thompson MA, Lane AA. Analysis of first-year twitter metrics of a rare disease community for blastic plasmacytoid dendritic cell neoplasm (BPDCN) on social media: #BPDCN. Current Hematologic Malignancy Reports. 2017;12:592–7.CrossRefGoogle Scholar
  16. 16.
    •• Pemmaraju N, Thompson MA, Qazilbash M. Disease-specific hashtags and the creation of Twitter medical communities in hematology and oncology. Semin Hematol. 2017;54:189–92 This is comprehensive review of disease-specific hostages and its impotence in medical communities in hematology and medical oncology.CrossRefGoogle Scholar
  17. 17.
    Pemmaraju N, Gupta V, Thompson MA, Lane AA. Social media and Internet resources for patients with blastic plasmacytoid dendritic cell neoplasm (BPDCN). Current Hematologic Malignancy Reports. 2016;11:462–7.CrossRefGoogle Scholar
  18. 18.
    •• 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;10:413–20 This is very comprehensive review regarding the creation of #MPN.CrossRefGoogle Scholar
  19. 19.
    Ibrahim AM, Lillemoe KD, Klingensmith ME, Dimick JB. Visual abstracts to disseminate research on social media. Ann Surg. 2017;266:e46–8.  https://doi.org/10.1097/sla.0000000000002277.CrossRefPubMedGoogle Scholar
  20. 20.
    Savage N. Scientists in the Twitterverse. Cell. 2015;162:233–4.CrossRefGoogle Scholar
  21. 21.
    Cardona-Grau D. Commentary on “The effect of social media (#SoMe) on journal impact factor and parental awareness in paediatric urology.”. J Pediatr Urol. 2017;13:514.CrossRefGoogle Scholar
  22. 22.
    Logan AC. Using social media at national meetings in hematology—optimal use, tips, strategies, and limitations. Current Hematologic Malignancy Reports. 2017;12:605–10.CrossRefGoogle Scholar
  23. 23.
    Pemmaraju N, Thompson MA, Mesa RA, Desai T. Analysis of the use and impact of twitter during American Society of Clinical Oncology annual meetings from 2011 to 2016: focus on advanced metrics and user trends. Journal of Oncology Practice. 2017;13:e623–31.  https://doi.org/10.1200/jop.2017.021634.CrossRefPubMedPubMedCentralGoogle Scholar
  24. 24.
    Dahiya S, Kansagra AJ, Ali SS. Increasing use of social media at annual ASH meetings. Blood. 2015;126:4469.Google Scholar
  25. 25.
    Attai DJ, Anderson PF, Fisch MJ, Graham DL, Katz MS, Kesselheim J, et al. Risks and benefits of Twitter use by hematologists/oncologists in the era of digital medicine. Semin Hematol. 2017;54:198–204.CrossRefGoogle Scholar
  26. 26.
    Komrokji RS, Seymour JF, Roberts AW, Wadleigh M, To LB, Scherber R, et al. Results of a phase 2 study of pacritinib (SB1518), a JAK2/JAK2(V617F) inhibitor, in patients with myelofibrosis. J Oncol Pract. 2015;125:2649–55.Google Scholar
  27. 27.
    Tefferi A, Lasho TL, Begna KH, Patnaik MM, Zblewski DL, Finke CM, et al. A pilot study of the telomerase inhibitor imetelstat for myelofibrosis. N Engl J Med. 2015;373:908–19.CrossRefGoogle Scholar
  28. 28.
    Mccarthy CP, Decamp M, Mcevoy JW. Social media and physician conflict of interest. Am J Med. 2018;131:859–60.  https://doi.org/10.1016/j.amjmed.2018.02.011.CrossRefPubMedGoogle Scholar
  29. 29.
    Decamp M. Physicians, social media, and conflict of interest. J Gen Intern Med. 2012;28:299–303.CrossRefGoogle Scholar
  30. 30.
    Farnan JM. Online medical professionalism: patient and public relationships: policy statement from the American College of Physicians and the Federation of State Medical Boards. Ann Intern Med. 2013;158:620–7.CrossRefGoogle Scholar
  31. 31.
    Iii FJG, Sheps S, Ho K, Novak-Lauscher H, Eysenbach G. Social media: a review and tutorial of applications in medicine and health care. J Med Internet Res. 2014;16:e13.  https://doi.org/10.2196/jmir.2912.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Department of Hematology and Medical Oncology, Cleveland Clinic, Lerner College of Medicine, Case Western Reserve UniversityTaussig Cancer InstituteClevelandUSA

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