A poster presentation for the Medical Library Association 2017 Annual Meeting in Seattle, by Lynne Frederickson and PF Anderson.

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].