Developing Custom Vocabularies for Personalized Web Content

Michael Lauruhn, Taxonomy Strategies LLC | Derek Olson, Foraker Design

DEVELOPMENT OF CUSTOM
VOCABULARIES TO DELIVER
PERSONALIZED CONTENT FOR
BREASTCANCER.ORG

Copyright 2009 Taxonomy Strategies LLC & Foraker Design LLC. All rights reserved.

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

About Us: Mike Lauruhn

  Over 8 years working at Internet companies.
  Member, Taxonomy Strategies
  Content Intelligence Technical Specialist, CMP Media
  Metadata Consultant, Interwoven
  Ontologist / Category Manager, Looksmart.com
  Community service.
  Cataloger, California Newspaper Project
  Co-President, American Library Association Student
Chapter
  Volunteer, Electronic Discovery Center, San Francisco
Public Library
  Church Librarian – Collection Development & Marketing
Activities


About Us: Derek Olson

  Vice President, Foraker Design
  Over 9 years of experience building Websites and
Online Communities, with a focus on:
  User Experience
  Search
  Information Architecture
  Online Marketing
  Professional Memberships:
  Web Analytics Association
  Usability Professionals’ Association
  Phi Beta Kappa Society


Topics

  Introduction
  Background & History of Breastcancer.org
  New Personalization Initiatives
  Vocabulary and Metadata Development
  Current Status and Looking Ahead


Introduction: Why are we doing this?

“You have
breast
cancer...”


Breast cancer diagnosis terms…

?


Subtraction Probe Technology Chromogenic In Situ Hybridization



CA 15.3

Colloid
Thermography Cribriform


Mucinous

Oncogene Overexpression



CA 15.3
ER/PR+ Digital Tomosynthesis
Colloid Papillary
CA125


Mucinous Ki-67

Comedo Her2/neu
Progesterone Receptors CA 27.29



Medullary CA 15.3 Positive margins
ER/PR+ Digital Tomosynthesis
Colloid Papillary
CA125
Ductal Lavage Ductal Carcinoma in situ


Mucinous Ki-67 ImmunoHistoChemistry

Comedo Her2/neu
Progesterone Receptors CA 27.29
Fluorescence In Situ Hybridization

Breast cancer treatment terms…

?


raloxifene



Aromatase Inhibitors

Axillary Lymph Node Dissection
fulvestrant

raloxifene
Faslodex

Femara

DIEP Flap


tamoxifen
Aromatase Inhibitors Lumpectomy

fulvestrant

raloxifene toremifene
Faslodex
TRU-QUANT

Arimidex
Femara
Aromasin
ERDs
DIEP Flap

Autologous Reconstruction tamoxifen
Aromatase Inhibitors Lumpectomy
Mastectomy
SERDs
fulvestrant
Supraclavicular Lymph Node Dissection
SERMs
Trastuzumab raloxifene toremifene
Faslodex
TRU-QUANT
Sentinel Lymph Node Dissection
Cyclophosphamide
Arimidex
Femara
Aromasin
paclitaxel ERDs
DIEP Flap Taxotere
Latissimus Dorsi Flap

Diagnosis: Breast Cancer


Breastcancer.org’s Mission Statement:

“ To help women and
their loved ones make
sense of the complex
medical and personal
information about
breast cancer, so they
can make the best
decisions for their
lives
”

Background & History of Breastcancer.org

  Founded in 1999 by Marisa
Weiss, M.D., a Philadelphia-
area radiation oncologist
  Original website grew from
book entitled Living Beyond
Breast Cancer, by Dr. Weiss
  Modest traffic of a few
thousand visitors per year
has grown to over 7 million,
currently the most heavily-
trafficked breast cancer
website in the world (source:
Alexa)


Background & History of Breastcancer.org
Fulfilling the mission:
  Professional Advisory Board of over 70
experts in medical, health, and
scientific fields related to breast
cancer
  Over 5,000 pages of expert-reviewed,
original content on medical, personal,
and practical issues related to breast
cancer
  Monthly “Ask-the-Expert” Online
Conferences
  “Research News” program covering
new medical research
  Free Printed Booklets

User Research

  Breastcancer.org began usability testing in 2003, and
completed a website redesign in 2004 that offered
improved navigation and site architecture, as well as
an updated look and feel
  In 2006 and 2007, a more extensive program of User
testing, patient interviews, surveys, and persona
development began:
  Over 40 individuals from Breastcancer.org’s user
audience participated in user testing, and in-
person and telephone interviews
  Thousands of website visitors participated in
several online surveys


Lessons from User Research…

  Users needed more than just clear
navigation and powerful search
amidst heavy “medicalese” and
complex interactions
  Users reported wanting
personalized information, but there
were risks…


Traditional Personalization Models

  E-Commerce Model
  Based on purchase history, browse affinity.
  Shoppers similar to you.
  Tangible categories: Author, Actor, Genre, etc.


Traditional Personalization Models - Drawbacks

  Doesn’t allow for conditions and considerations.
  Assumes you are a lifetime fan.
  There is no sequential “lifecycle” of genres.
  No parallels for Breastcancer.org community.
  No blanket genre of types, diagnoses, and other conditions.



  News Alerts and RSS Model
  Based on topical subjects.
  Almost always proper nouns: Names, Places,
Companies.


Traditional Personalization Models - Drawbacks

  Topics and metadata are inconsistently applied to content.
  Topics can be unintentionally added to content through full-
text indexing.
  Error rate would be unacceptable for sensitive content.



  Fell short due to the complexity of diagnosis situations
  “Personalization” had to mean more than:
  Where do you live?
  What type of cancer do you have?


Further Lessons from User Research…

Risks of Personalization: “Early stage” vs.
“We caught it
  Overly negative and/or poorly
early”
targeted research articles
  Too much info about
advanced new treatments Role of hormone
that they were “missing out receptors in
on” treatment
  Users unable to report their
own diagnosis information
accurately Diagnosis inertia
(e.g. “Invasive
DCIS”)


Vocabulary Development

  Collaborative meetings that included:
  Foraker Design
  Breastcancer.org
–  Editorial Management
–  Business Development
  Taxonomy Strategies LLC

  Goals:
  Subject Vocabularies for Content Personalization
  Metadata schema for Content Management
administration



Five vocabularies were developed to organize content.
Clinical
Audience Situation Perspective Topic
Characteristics
•  Patients •  Just Diagnosed •  Lobular Carcinoma •  Clinical •  Environmental Risk
•  Family & Friends •  Waiting for Test In Situ •  Emotional Factors
•  Press & Public Results •  Ductal Carcinoma In •  Practical •  Genetic Risk Factors
•  Clinicians & •  Undergoing Situ •  Symptoms, Self-
Providers Treatment •  Invasive or Detection & Breast
•  Worried Well •  Recovery & Infiltrating Lobular Self-Examination
Renewal Carcinoma •  Medical Screening
•  Metastatic Cancer •  Invasive or and Testing
•  End of Life Infiltrating Ductal •  Dealing with Cancer
Carcinoma Fear
•  Inflammatory Breast •  Surgery
Cancer •  Chemotherapy
•  Recurrent Cancer •  Radiation Therapy
•  Metastatic •  Hormonal Therapy
•  Paget's Disease •  Surgery Recovery
•  Male Breast Cancer •  Reconstruction
•  Post-menopausal •  Menopausal
•  Pre or Peri- Symptoms
menopausal •  Pain
•  Early Stage BC •  Pain Medications
•  Advanced BC



  Audience Facet Audience
  Provides a short list of major Patients
audience groups for which the Family & Friends
content is intended. Press & Public
  Sample filters: Clinicians & Providers
Worried Well
  Technical or clinical content
intended Health Care providers
(goes to Clinicians & Providers)
  News or information about
fundraising or events (goes to
Press & Public)



  Situation Facet Situation
  Short list of major phases in a
Just Diagnosed
person's dealings with breast Waiting for Test Results
cancer. Undergoing Treatment
  Most sensitive of the facets. Recovery & Renewal
  Purpose: Metastatic Cancer
End of Life
  Used to help people focus in
on the most appropriate
content for their situation.



  Clinical Characteristics Facet Clinical Characteristics
  Include types of breast cancer Lobular Carcinoma In Situ
or accompanying physiological Ductal Carcinoma In Situ
Invasive or Infiltrating Lobular
states. Carcinoma
  Could have been expanded into Invasive or Infiltrating Ductal
multiple coordinated facets. Carcinoma
Inflammatory Breast Cancer
  Most technical of the facets. Recurrent Cancer
Metastatic
  Purpose:
Paget's Disease
  Qualifies any content that is Male Breast Cancer
about a specific condition. Post-menopausal
Pre or Peri-menopausal
  Closely matches the community Early Stage BC
member profiles and signatures Advanced BC

(Partial list displayed.)


Vocabulary Development 

  Perspective Facet Perspective
•  Coarse categorization of the Clinical
page's overall approach to a Emotional
topic. Practical
Press/Public
  Explanation:
•  Clinical content is intended for
technical and medical content.
•  Emotional is supportive content based on patient’s status.
•  Practical is for “how-tos” and procedural information for day-to-day
management.
•  Press/Public is to filter non-cancer related content (fundraising
and awards) from patients and family.


Vocabulary Development 

  Topics Facet Topic
  Major subject categories and Environmental Risk Factors
Genetic Risk Factors
topics concerned with breast Symptoms, Self-Detection & Breast
cancer. Self-Examination
  Topics you would “expect to Medical Screening and Testing
Dealing with Cancer Fear
find” in an index of Breast
Surgery
Cancer information. Chemotherapy
  Subjects that didn’t fit into Radiation Therapy
Hormonal Therapy
existing facets.
Surgery Recovery
  Purpose: Reconstruction
Menopausal Symptoms
  The core of the taxonomy as Pain
far as subject access is Pain Medications
concerned. Legal & Financial 

(Partial list displayed.)


Examples

Topics Situation Perspective
Chemotherapy Undergoing Treatment Practical

Contains content with a Practical tone.


Examples

Topics Situation Perspective
Chemotherapy Undergoing Treatment Practical

Contains content with a Clinical tone.


Examples

Topics Situation Clinical Characteristics
Surgery Recovery Undergoing Treatment Lymph Nodes Removed: 21


Examples
Audience Situation Clinical Characteristics
Patients Undergoing Treatment Estogen Receptor: Pos.
Progesterone Receptor: Pos.
Pre-menopausal

Treatment approved for pre-menopausal.


Examples
Audience Situation Clinical Characteristics
Patients Undergoing Treatment Estogen Receptor: Pos.
Progesterone Receptor: Pos.
Pre-menopausal

Treatments only approved for post-menopausal.

Current Status

  Meta data schema and controlled vocabulary is currently
in implementation phase on all 5,000+ pages of the
website
  Pilot program of collecting diagnosis information from
Breastcancer.org Discussion Boards users has resulted
in a surprise discovery…


Current Status: Discussion Boards Pilot
Surprise discovery helps counter personalization risks
  Breastcancer.org launched its
first Discussion Board
application in 2001
  Currently the largest breast
cancer-specific Discussion
Board in the world
  Key Discovery: a healthy
dynamic between regular
users, “newbies”, and highly-
vetted medical content
surrounding the Community


Current Status: The Role of Community

“Signature” field structured data


13 “Clinical Characteristics”
began being captured in
September 2007
  Stage
  Lymph Nodes
  Tumor Size
  Tumor Grade
  ER/PR Status
  HER2/neu Status
  BRCA1/BRCA2
  Diagnosis Date
  Menopausal Status
  First BC?
  Type
  Recurrent?
  Metastasis?


13 “Clinical Characteristics” for web content map to
“Diagnosis Information” in Community:
  Diagnosis Date
  Menopausal Status
  First BC?
  Type
  Recurrent?
  Metastasis?
  Stage
  Lymph Nodes
  Tumor Size
  Tumor Grade
  ER/PR Status
  HER2/neu Status
  BRCA1/BRCA2


Looking Ahead

Currently in funding stage: Pilot program for collecting
treatment information, status, timing for Discussion
Boards users

Goals:

  Provide timely information about side effects and
practical concerns

  Provide additional social networking options (e.g.
eCards when finishing with chemo)

Expected release: Fall 2009

Looking Ahead

Currently in funding stage: Pilot program for collecting
clinical/diagnosis information from new users outside of
Discussion Boards

Goals:

  Provide immediate guidance & resources (no
membership required)

  Additional options for saving information, returning
later, getting physician help completing

Expected release: Winter 2009

Questions?

Michael Lauruhn
(415) 378-2747
mlauruhn@taxonomystrategies.com
www.taxonomystrategies.com

Derek Olson
(303) 449-0202
dlo@foraker.com
www.foraker.com

Ron Daniel, Jr.
(925) 368-8371
rdaniel@taxonomystrategies.com
www.taxonomystrategies.com


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