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Translating Medical Research for
Patient Findability
Michael Panzer | Mike Hatton

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Professional Background
• Large-scale classification systems
• Semantic web technology
• Long-time involvement with the
Dewey Decimal Classification
• Editor-in-Chief until 2015
• Notorious linked data evangelist
• Currently
• Manager-Ontologist at Mayo Clinic
• 9 person team of (Sr) Ontologists
dewey.info

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Mayo Clinic
Locations

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Outline
1. Situation/Background
• Status quo ante for the publication of
clinical trials
2. Designing a metadata framework
• Leveraging standard clinical vocabularies
• Developing a clinical study ontology
3. Evaluating outcomes
• Findability, interoperability
• Desiderata

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What is a Clinical Trial (Clinical Study)?
• “A research study using human subjects to
evaluate biomedical or health-related outcomes.
Two types of clinical studies are Interventional
studies (or clinical trials) and Observational
studies.”

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Publication of Clinical Trials
• Situation: People couldn’t find trials, study
coordinators couldn’t find them either!
• Background: Antiquated browse system based
on tags assigned by developers
• Focus on benefactors, not study purpose
• Started using MeSH (only UF)
• Trial summary was written for specialists
• Clinical trial management part of larger
reworking of comprehensive research
management

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External Web
epiCenter
Core Study Data
Mayo sponsored studies -
More information to
populate registration,
including SNOMED terms
Clinicaltrials.gov
Sponsored studies
Ontologist
Core Study Data Capture Process Flow
KCMS

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Outline
1. Situation/Background
• Status quo ante for the publication of
clinical trials
2. Designing a metadata framework
• Developing a clinical study ontology
• Leveraging standard clinical vocabularies
3. Evaluating outcomes
• Findability, interoperability
• Desiderata

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Career
Opportunity
isLocatedIn
Location
isLocationOf
Research
Study
Organization
Person
Information
Resource
Clinicial Trial
Subclass of
isLocationOf
isLocatedIn
isLocationOf
isLocatedIn
conducts
isRelatedResourceOf
relatedResource
conductedBy
offers
isOfferedBy
Research Web
Domain Model

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Clinicial Trial
primaryCondition
secondaryCondition
intervention
SNOMED
Concept
skos:closeMatch
Consumer
Health
Vocabulary
Concept
associatedBodySystem Anatomical
Structure
Medical
Specialty
associatedMedicalSpecialty
Organization
isConductedBy
associatedProcedure
associatedCondition
RxNorm
Concept
investigatesDrugIntervention
Annotation
Design

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Annotation Design
Annotation Property Require
d
Repeatab
le
Vocabulary Provide
to
epiCenter
?
SNOMED
synonyms
needed?
Primary Condition N Y SNOMED
CT
Y Y
Secondary Condition N Y SNOMED
CT
Y Y
Intervention N Y SNOMED
CT
Y Y
Drug Intervention N Y RxNorm Y Y
Associated
Condition
N Y CHV Y N
Associated
Procedure
N Y CHV Y N
Medical Specialty N Y SNOMED >
Healthcare
specialty
Y N

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Vocabulary selection
• SNOMED CT
• Comprehensive clinical health terminology
• ~300,000 concepts
• Synonymy
• Mappings to CHV
• CHV (Consumer Health Vocabulary)
• Set of consumer-oriented concepts of
conditions, procedures, symptoms, devices,
anatomy
• ~5,000 concepts, rich set of relationships

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Vocabulary selection
• RxNorm
• Normalized names for clinical drugs and
links to many drug vocabularies
• Generic and branded drugs
• Part of UMLS, edited by NLM

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Vocabulary application
• Primary subject captures the primary condition
the study is researching to finest granularity
• Secondary subject captures other conditions
• “Diabetic neuropathy in patients with
untreated diabetes”

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Questions that can be answered by the
design
• What SNOMED codes are annotated to this study?
• What CHV terms are annotated to this study?
• What organizations are associated to this study?
• What medical specialty terms are associated to this
study?
• What body systems are associated to this study?
• What are the SNOMED synonyms associated with
this study?

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Outline
1. Situation/Background
• Status quo ante for the publication of
clinical trials
2. Designing a metadata framework
• Leveraging standard clinical vocabularies
• Developing a clinical study ontology
3. Evaluating outcomes
• Findability, interoperability
• Desiderata

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Interoperability benefits
• Integration for trials with health information
content
• Condition and procedure topic pages
• Search
• Clinical study header service
• Integration with clinical departments
• Emphasis on recall rather than precision
• Example: Endocrinology
• Integration with research centers

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mayoclinic.org mayo.edu
Integration overview

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Examples
• mayoclinic.org: Condition
• mayoclinic.org: Procedure
• mayoclinic.org: Department
• mayo.edu/research: Research organization

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Outcomes
• Cancer Center saw increase from 3500
inquiries a year to 5000 after improvements
went live
• Inquiry volume continues to increase
• Deeper dive into a random sample of calls from
Mar. 2015–Mar. 2016
• 1921 inquiries
• 20% resulted in appointments
• 25% of those resulted in signed consents (5%
overall)

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Questions & Discussion

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Translating Medical Research for
Patient Findability
Michael Panzer