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Figure.
Quarterly Tweets Using the Cancer Tag Ontology, July 2011 Through June 2015
Quarterly Tweets Using the Cancer Tag Ontology, July 2011 Through June 2015
Table.  
Hashtags in the Cancer Tag Ontology
Hashtags in the Cancer Tag Ontology
1.
Prestin  A, Vieux  SN, Chou  WY.  Is online health activity alive and well or flatlining? findings from 10 years of the health information national trends survey.  J Health Commun. 2015;20(7):790-798.PubMedGoogle ScholarCrossref
2.
Katz  M.  Hashtags in cancer care: embedding meaning in digital health.http://www.symplur.com/blog/hashtags-cancer-care-embedding-meaning-digital-health/. Accessed August 1, 2015.
3.
Alves  H, Santanche  A.  Folksonomized ontology and the 3E steps technique to support ontology evolvement.http://www.websemanticsjournal.org/index.php/ps/article/view/307/309. Accessed August 1, 2015.
4.
Kim  HL, Scerri  S, Breslin  JG, Decker  S, Kim  HG.  The state of the art in tag ontologies: a semantic model for tagging and folksonomies. International conference on dublin core and metadata applications, Berlin, Germany, 2008. http://edoc.hu-berlin.de/conferences/dc-2008/kim-hak-lae-128/PDF/kim.pdf. Accessed August 1, 2015.
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 Med Internet Res. 2015;17(7):e188.PubMedGoogle ScholarCrossref
Research Letter
March 2016

Disease-Specific Hashtags for Online Communication About Cancer Care

Author Affiliations
  • 1Department of Radiation Medicine, Lowell General Hospital, Lowell, Massachusetts
  • 2Symplur LLC, Los Angeles, California
  • 3Taubman Health Sciences Library, University of Michigan, Ann Arbor
  • 4Aurora Research Institute, Aurora Health Care, Milwaukee, Wisconsin
  • 5Department of Surgery, David Geffen School of Medicine at University of California, Los Angeles
  • 6American Society of Clinical Oncology, Alexandria, Virginia
  • 7Gillette Center for Gynecologic Oncology, Massachusetts General Hospital, Boston
 

Copyright 2016 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.

JAMA Oncol. 2016;2(3):392-394. doi:10.1001/jamaoncol.2015.3960

Increasingly, patients, caregivers, and health care professionals (HCPs) go online to learn about and discuss cancer care.1 However, finding other people or organizations with similar interests can be difficult without some structure.

Hashtags are user-generated tags that can organize and aggregate content on social networks. In July 2011, 2 patient advocates started a breast cancer chat on Twitter using the tag #bcsm (breast cancer social media); one of us (D.J.A.) joined as a comoderator. This same model but with hashtag #btsm was used to discuss brain tumors in January 2012. Both tags are now regularly used on Twitter by patients, caregivers, and HCPs.

Dedicated hashtags may make it easier to engage in relevant conversations online for other types of cancer. In this study, we describe a way to use disease-specific hashtags similar to #bcsm and #btsm to organize and increase online discussion of cancer care.

Methods

Based on the models using the #bcsm and #btsm hashtags, 2 of us (M.S.K. and P.F.A.) developed a set of 23 new cancer-specific tags that met the following criteria: disease specific, short, unique or minimally used on Twitter, and ending in “sm” for “social media” (as a prompt that online use is public). We selected this design to balance practical use with the ability to organize content. Initially proposed in July 2013, this cancer tag ontology (CTO) was posted on Symplur in November 2013 after public commentary and engagement (Table).2

We analyzed the number of tweets and users of the tags quarterly from April 2011 through June 2015 using Symplur Signals, which accesses Twitter’s application program interface. One of us (M.S.K.) classified the most active 100 users as patients, caregivers and/or advocates, physicians, nonphysician HCPs; individuals not otherwise specified, hospitals, other health care organizations, and spam accounts. Patients were defined by self-identification with the disease associated with each CTO tag. To assess hashtag adoption by well-known institutions, we evaluated the prevalence of CTO use by the National Comprehensive Cancer Network (NCCN)- and National Cancer Institute (NCI)-designated cancer centers as well as the NCI and American Society of Clinical Oncology (ASCO).

Results

During the study period, there were 762 103 tweets by 117 064 user accounts. The hashtags #bcsm and #lcsm had the most use, with 323 720 and 143 089 tweets, respectively.

After mid-2013, the most active tags had organized live chats: #ayacsm, #gyncsm, #lcsm, #mmsm, and #pancsm, accounting for 92.2% of all CTO hashtag activity. Among the top 100 users, 34% were patients, 17% caregivers and/or advocates, 14% physicians, 8% nonphysician HCPs, 7% individuals, 2% hospitals, 14% other organizations, and 4% spam generators.

Quarterly tweet activity for all 25 CTO tags increased from 13 778 tweets in the third quarter of 2011 to 87 319 in second quarter of 2015 (Figure). Among 26 NCCN cancer centers, 80.7% used the CTO tags in tweets (median, 86; range, 18-2555). For 44 NCI-designated comprehensive cancer centers, 63.6% used the CTO. The most active organizations were Dana-Farber Cancer Institute (2555 tweets, 4 accounts) and MD Anderson Cancer Center (1771 tweets, 12 accounts). The NCI (749 tweets, 13 accounts) and ASCO (3238 tweets, 4 accounts) also used the CTO frequently.

Discussion

In this report, we describe a way to use hashtags to organize disease-specific health information on Twitter. Most hashtag use develops ad hoc rather than in an organized fashion, but some studies suggest that structured tags can be a successful way to share.3,4 We observed a 13% compound quarterly growth rate in Twitter activity, indicating widespread adoption of disease-specific hashtags by a variety of stakeholders.

The CTO creates a practical way to facilitate patient, clinician, and institutional access to health information and engagement. Preliminary data from the #bcsm hashtag suggest that interaction through Twitter may improve patient knowledge and reduce anxiety.5 We have described feasibility and growth of organized cancer information online. Further study is needed to determine whether the CTO can improve health literacy or other meaningful outcomes.

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Article Information

Accepted for Publication: August 21, 2015.

Corresponding Author: Matthew S. Katz, MD, Lowell General Hospital, 295 Varnum Ave, Lowell, MA 01854 (Matthew.Katz@lowellgeneral.org).

Published Online: November 5, 2015. doi:10.1001/jamaoncol.2015.3960.

Author Contributions: Dr Katz had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Katz, Anderson, Thompson, Johnston.

Acquisition, analysis, or interpretation of data: Katz, Utengen, Thompson, Attai, Dizon.

Drafting of the manuscript: Katz, Utengen, Thompson, Dizon.

Critical revision of the manuscript for important intellectual content: Katz, Anderson, Thompson, Attai, Johnston, Dizon.

Statistical analysis: Utengen, Thompson.

Administrative, technical, or material support: Utengen, Attai, Johnston.

Study supervision: Thompson.

Conflict of Interest Disclosures: Mr Utengen is cofounder of Symplur LLC, which promotes the use of social media and Twitter in health care. No other conflicts are reported.

Previous Presentation: This study was presented at the ASCO Annual Meeting; June 2, 2015; Chicago, Illinois.

Additional Contributions: We thank Lee Aase, BS, Mayo Clinic; Michael Fisch, MD, AIM Specialty Health; Thomas Lee, BS NHA, Symplur LLC; and Robert Miller, MD, American Society of Clinical Oncology, for input on the design and presentation of this study at the ASCO Annual Meeting in June 2015.

Correction: This article was corrected on December 23, 2015, to fix an author’s affiliation name.

References
1.
Prestin  A, Vieux  SN, Chou  WY.  Is online health activity alive and well or flatlining? findings from 10 years of the health information national trends survey.  J Health Commun. 2015;20(7):790-798.PubMedGoogle ScholarCrossref
2.
Katz  M.  Hashtags in cancer care: embedding meaning in digital health.http://www.symplur.com/blog/hashtags-cancer-care-embedding-meaning-digital-health/. Accessed August 1, 2015.
3.
Alves  H, Santanche  A.  Folksonomized ontology and the 3E steps technique to support ontology evolvement.http://www.websemanticsjournal.org/index.php/ps/article/view/307/309. Accessed August 1, 2015.
4.
Kim  HL, Scerri  S, Breslin  JG, Decker  S, Kim  HG.  The state of the art in tag ontologies: a semantic model for tagging and folksonomies. International conference on dublin core and metadata applications, Berlin, Germany, 2008. http://edoc.hu-berlin.de/conferences/dc-2008/kim-hak-lae-128/PDF/kim.pdf. Accessed August 1, 2015.
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 Med Internet Res. 2015;17(7):e188.PubMedGoogle ScholarCrossref
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