Online and Social Media Resources for Patients with MDS
- 7 Downloads
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.
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.
Social media is a powerful educational resource for patients with MDS when used conscientiously.
KeywordsMDS Social media Twitter
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.
Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance
- 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.CrossRefPubMedPubMedCentralGoogle Scholar
- 12.Cancer Tag Ontology. In: Symplur. https://www.symplur.com/healthcare-hashtags/ontology/cancer/. Accessed 22 May 2018.
- 13.Hematology Tag Ontology. In: Symplur. https://www.symplur.com/healthcare-hashtags/ontology/hematology/. Accessed 22 May 2018.
- 14.Oncology Tag Ontology. In: Symplur. https://www.symplur.com/healthcare-hashtags/ontology/oncology/. Accessed 22 May 2018.
- 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.CrossRefPubMedGoogle Scholar
- 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.CrossRefPubMedGoogle Scholar
- 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.Dahiya S, Kansagra AJ, Ali SS. Increasing use of social media at annual ASH meetings. Blood. 2015;126:4469.Google Scholar
- 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