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Ontologies, Tag Collections, and Folksonomies: Curating Disease Hashtags to Enhance Collaboration and Dialogue

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Poster Presented at MLA (Medical Library Association) 2017 conference. Co-author Patricia Anderson.

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Ontologies, Tag Collections, and Folksonomies: Curating Disease Hashtags to Enhance Collaboration and Dialogue

  1. 1. Ontologies, Tag Collections, and Folksonomies: Curating Disease Hashtags to Enhance Collaboration and Dialogue References 1. Anderson, PF. Hashtags for Twitter Cancer Communities. https://etechlib.wordpress.com/2013/07/08/hashtags-for-twitter-cancer-communities/. Accessed May 1 2017. 2. Frederickson, L. Biomedical Ontologies and Controlled Vocabularies. http://guides.lib.umich.edu/ontology. Accessed May 1 2017. 3. Gruber, T.R. A Translation Approach to Portable Ontology Specification. Knowledge Acquisition. 1993; 5 (2):199-220. http://tomgruber.org/writing/ontolingua-kaj-1993.pdf. Accessed May 1 2017. 4. Katz MS, Utengen A, Anderson PF, Thompson MA, Attai DJ, Johnston C, Dizon DS. Disease-Specific Hashtags for Online Communication About Cancer Care. JAMA Oncol. 2016 Mar 1;2(3):392-4. doi: 10.1001/jamaoncol.2015.3960. 5. Symplur: Healthcare Hashtags: Ontologies: http://www.symplur.com/healthcare-hashtags/ontology/ Images • Categorisation-hierarchy-top2down.svg. Plank, A. https://commons.wikimedia.org/wiki/File:Categorisation-hierarchy-top2down.svg • Chaotic shapes [abstract]. photofree.ga. https://openclipart.org/detail/251370/chaotic-shapes-abstract Lynne Frederickson, MA, Data Standards and Terminologies Informationist; P.F. Anderson, MILS, Emerging Technologies Informationist Taubman Health Sciences Library, University of Michigan Tag Ontologies – The Next Step The authors propose further refinements to the tag collection concept to create a more robust tag ontology. An ontology is a formal specification of the terms in a domain, and the relations among them [3]. Ontologies describe data to support knowledge discovery and facilitate interoperability between systems. Ontologies are used in the biomedical and health sciences in areas ranging from gene function, as seen in the gene ontology GO, to those used in healthcare informatics, such as the International Classification of Diseases, ICD [2]. What is a Folksonomy? A folksonomy is an unmanaged set of spontaneously generated hashtags. Online communities of patients and healthcare professionals use hashtags to track disease- and condition-specific conversations. Tag Collections – Formalized Folksonomies A tag collection is the result of an effort to enhance and expand a set of related user-created hashtags through curation. This hybrid bottom-up/top-down approach has been evangelized by Dr. Matthew Katz and Patricia Anderson as part of the Cancer Tag Ontology* (CTO) project. The CTO has played a key role in the standardization and adoption of many cancer-specific tags, including [5] Applying Ontological Concepts to Disease Hashtags Using the CTO as a foundation, and in partnership with COSMO, the authors will apply some basic ontological concepts, including defining the structural and relational elements between the tags. The goals of the project are to • Create a tag set that better supports tracking, sorting for improved discovery, and clustering to enhance analysis • Identify and fill domain-specific gaps • Preserve the usability and transparency of the best folksonomic tags For example, within the current CTO there are tags for gynecologic cancer (#GynCSM) and breast cancer (#BRCM) but no tags for other gynecologic cancers, including cervical, ovarian, and uterine cancer. The new tag ontology will include a complete set of tags for gynecologic cancers, with a formal “isa” relationship to the umbrella tag for gynecologic cancer. Role of Folksonomies in Disease- Specific Conversations Patients use hashtags to • Discover information about their condition • Organize personal content • Connect with other patients for support and community Healthcare professionals use hashtags to • Engage in dialogue with other practitioners • Advocate for, educate, and learn from patients Hashtags are also used for • Marketing and promotion • Research, but with limited capabilities due to the fractured and inconsistent nature of user- generated tags Tag Collections – Are they Working? A review of tweets using the 25 CTO tags between April 2011 and June 2015 revealed that there were 762,103 tweets by 117,064 user accounts. From mid- 2013 the 5 most active tags all had organized live tweets and accounted for 92% of all activity [4]. Tag Ontologies – Challenges and Limitations A more formal tag ontology will only be useful if it is adopted and broadly used by its intended audience, patients and healthcare professionals. Barriers to adoption that need to be addressed: • Ontologies are inherently complex. The new ontology must be simple enough to be intuitive. • Ontologies are prescriptive. The rules of the new ontology should be meaningful so that end users do not see them as arbitrary. Tag Collections – Curatorial Activities Anyone can propose a hashtag to be archived in the Healthcare Hashtag Project hosted on Symplur. Proposed hashtags should • Add value to healthcare conversations • Be already in use by multiple people • Not already be in active use for another purpose CTO tags are collaboratively curated by Symplur and COSMO (Collaboration for Outcomes with Social Media in Oncology). Tags are reviewed according to additional criteria that are evolving and are moving toward codification. #ayacsm #bcsm #btsm #gyncsm #lcsm #mmsm #pancsm Adolescent and Young Adult Cancer Breast Cancer Brain Tumors Gynecologic Cancers Lung Cancer Multiple Myeloma Pancreatic Cancer *Although the tag collection is called an ontology, it is not an ontology in a formal sense. • Current tags are already used broadly. The new tags should be sufficiently similar to tags already in use to ease adoption. #BCSM #BreastCancer #BRCA #BRCAmutation #BRCA1 #BRCA2 Background Hashtags arise spontaneously, creating rich and dynamic folksonomies for tracking online conversations. Traditional user- generated hashtags are effective for narrowcasting events and supporting localized conversations, but the lack of conventions creates confusion and does not scale well for broader dialogues on complex themes. We intend to promote a better understanding of ontological concepts to facilitate consensus and enhance disease-specific online dialogue. Folksonomies – the Current Mess Although folksonomies often have predictable conventions, there are challenges inherent in unmanaged and organically evolving systems. Because there is no formal authority governing tag use and selection, the problems of duplicate, overloaded, enigmatic and cumbersome tags can fracture and isolate conversations. For example, the following duplicate tags are all used for breast cancer: #BRCA is also overloaded, in that it is used in conversations specifically about the BRCA gene mutation, along with the following redundant or overlapping tags: However the crowdsourced nature of folksonomic tagging does have benefits, including immediacy and engagement [1].

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