Developing Custom Vocabularies for Personalized Web Content

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

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

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


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



Colloid

Oncogene Overexpression


Thermography

CA 15.3

Cribriform

Mucinous



Colloid

Progesterone Receptors

ER/PR+

Her2/neu Oncogene Overexpression

Digital Tomosynthesis


Thermography

CA 15.3

CA125

CA 27.29

Comedo

Cribriform

Ki-67 Mucinous

Papillary



Colloid

Positive margins

ER/PR+

Her2/neu

Fluorescence In Situ Hybridization

ImmunoHistoChemistry

Digital Tomosynthesis

Ductal Lavage Subtraction Probe Technology Chromogenic In Situ Hybridization

Thermography

CA 15.3

CA125 Cribriform

Ductal Carcinoma in situ

Ki-67

Medullary

Mucinous

Papillary

Comedo

Progesterone Receptors

Oncogene Overexpression

CA 27.29


Breast cancer treatment terms…

?



raloxifene



Axillary Lymph Node Dissection

Aromatase Inhibitors

Faslodex

DIEP Flap

Femara

raloxifene

fulvestrant



ERDs


Arimidex

Lumpectomy

TRU-QUANT Faslodex

DIEP Flap

Aromasin Femara

raloxifene toremifene

fulvestrant

tamoxifen Aromatase Inhibitors



SERDs

paclitaxel


Trastuzumab

Mastectomy

Arimidex

Supraclavicular Lymph Node Dissection

Taxotere

Sentinel Lymph Node Dissection Cyclophosphamide

Lumpectomy

TRU-QUANT Faslodex

Latissimus Dorsi Flap

Autologous Reconstruction

DIEP Flap

Aromasin Femara

SERMs raloxifene toremifene

fulvestrant

tamoxifen Aromatase Inhibitors

ERDs


Diagnosis: Breast Cancer


Topics



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…


Topics



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.


  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.

Traditional Personalization Models - Drawbacks



  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:  Overly negative and/or poorly

targeted research articles   Too much info about

advanced new treatments that they were “missing out on”

  Users unable to report their own diagnosis information accurately

“Early stage” vs. “We caught it

early”

Role of hormone receptors in treatment

Diagnosis inertia (e.g. “Invasive

DCIS”)


Topics



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.

Audience

•   Patients •   Family & Friends •   Press & Public •   Clinicians & Providers

•   Worried Well

Situation

•   Just Diagnosed •   Waiting for Test Results

•   Undergoing Treatment

•   Recovery & Renewal

•   Metastatic Cancer •   End of Life

Clinical Characteristics

•   Lobular Carcinoma In Situ

•   Ductal Carcinoma In Situ

•   Invasive or Infiltrating Lobular Carcinoma

•   Invasive or Infiltrating Ductal Carcinoma

•   Inflammatory Breast Cancer

•   Recurrent Cancer •   Metastatic •   Paget's Disease •   Male Breast Cancer •   Post-menopausal •   Pre or Peri-menopausal

•   Early Stage BC •   Advanced BC

Topic

•   Environmental Risk Factors

•   Genetic Risk Factors •   Symptoms, Self-Detection & Breast Self-Examination

•   Medical Screening and Testing

•   Dealing with Cancer Fear

•   Surgery •   Chemotherapy •   Radiation Therapy •   Hormonal Therapy •   Surgery Recovery •   Reconstruction •   Menopausal Symptoms

•   Pain •   Pain Medications

Perspective

•   Clinical •   Emotional •   Practical


  Audience Facet   Provides a short list of major

audience groups for which the content is intended.

  Sample filters:   Technical or clinical content

intended Health Care providers (goes to Clinicians & Providers)

  News or information about fundraising or events (goes to Press & Public)

Audience

Patients Family & Friends Press & Public Clinicians & Providers Worried Well



  Situation Facet   Short list of major phases in a

person's dealings with breast cancer.

  Most sensitive of the facets.   Purpose:

  Used to help people focus in on the most appropriate content for their situation.

Situation

Just Diagnosed Waiting for Test Results Undergoing Treatment Recovery & Renewal Metastatic Cancer End of Life



  Clinical Characteristics Facet   Include types of breast cancer

or accompanying physiological states.

  Could have been expanded into multiple coordinated facets.

  Most technical of the facets.

  Purpose:   Qualifies any content that is

about a specific condition.   Closely matches the community

member profiles and signatures

(Partial list displayed.)


Clinical Characteristics Lobular Carcinoma In Situ Ductal Carcinoma In Situ Invasive or Infiltrating Lobular Carcinoma

Invasive or Infiltrating Ductal Carcinoma

Inflammatory Breast Cancer Recurrent Cancer Metastatic Paget's Disease Male Breast Cancer Post-menopausal Pre or Peri-menopausal Early Stage BC Advanced BC


  Perspective Facet •   Coarse categorization of the page's overall approach to a topic.

  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.


Perspective

Clinical Emotional Practical Press/Public


  Topics Facet   Major subject categories and

topics concerned with breast cancer.

  Topics you would “expect to find” in an index of Breast Cancer information.

  Subjects that didn’t fit into existing facets.

  Purpose:   The core of the taxonomy as

far as subject access is concerned.


Topic Environmental Risk Factors Genetic Risk Factors Symptoms, Self-Detection & Breast Self-Examination

Medical Screening and Testing Dealing with Cancer Fear Surgery Chemotherapy Radiation Therapy Hormonal Therapy Surgery Recovery Reconstruction Menopausal Symptoms Pain Pain Medications Legal & Financial

(Partial list displayed.)


Situation

Undergoing Treatment

Topics

Chemotherapy

Perspective

Practical

Examples

Contains content with a Practical tone.


Examples

Contains content with a Clinical tone.

Situation


Topics

Chemotherapy

Perspective

Practical


Examples

Situation


Topics

Surgery Recovery


Lymph Nodes Removed: 21


Examples

Treatment approved for pre-menopausal.

Situation


Audience

Patients


Estogen Receptor: Pos. Progesterone Receptor: Pos. Pre-menopausal


Examples

Treatments only approved for post-menopausal.

Situation


Audience

Patients


Estogen Receptor: Pos. Progesterone Receptor: Pos. Pre-menopausal


Topics



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

  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

Surprise discovery helps counter personalization risks


“Signature” field structured data

Current Status: The Role of Community


  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” began being captured in September 2007




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 [email protected] www.taxonomystrategies.com

Derek Olson (303) 449-0202 [email protected] www.foraker.com

Ron Daniel, Jr. (925) 368-8371 [email protected] www.taxonomystrategies.com

Developing Custom Vocabularies for Personalized Web Content

Technology

Transcript of Developing Custom Vocabularies for Personalized Web Content