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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Introduction: Why are we doing this?

“You have breast cancer...” ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer diagnosis terms…

? ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer diagnosis terms…

Subtraction Probe Technology Chromogenic In Situ Hybridization

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer diagnosis terms… CA 15.3 Colloid

Thermography

Cribriform

Subtraction Probe Technology Chromogenic In Situ Hybridization Mucinous Oncogene Overexpression

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer diagnosis terms… CA 15.3 ER/PR+ Colloid

Digital Tomosynthesis Papillary

CA125

Thermography

Cribriform

Subtraction Probe Technology Chromogenic In Situ Hybridization Mucinous Comedo

Ki-67 Her2/neu

Progesterone Receptors

Oncogene Overexpression CA 27.29

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer diagnosis terms…

ER/PR+ Colloid

Positive margins

CA 15.3

Medullary

Digital Tomosynthesis Papillary

CA125

Thermography

Cribriform

Ductal Carcinoma in situ

Ductal Lavage

Subtraction Probe Technology Chromogenic In Situ Hybridization Mucinous Comedo

Ki-67 Her2/neu

Progesterone Receptors

ImmunoHistoChemistry Oncogene Overexpression CA 27.29

Fluorescence In Situ Hybridization ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer treatment terms…

? ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer treatment terms…

raloxifene

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer treatment terms… Aromatase Inhibitors Axillary Lymph Node Dissection fulvestrant raloxifene

Faslodex

Femara DIEP Flap ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer treatment terms… Aromatase Inhibitors

tamoxifen Lumpectomy

Axillary Lymph Node Dissection fulvestrant raloxifene TRU-QUANT Arimidex

Femara

Faslodex

Aromasin

toremifene

ERDs

DIEP Flap ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Breast cancer treatment terms… Autologous Reconstruction Aromatase Inhibitors SERDs

Lumpectomy

Mastectomy

Axillary Lymph Node Dissection

fulvestrant SERMs

tamoxifen

Supraclavicular Lymph Node Dissection

Trastuzumab

TRU-QUANT

raloxifene

Faslodex

toremifene

Sentinel Lymph Node Dissection Cyclophosphamide Arimidex Femara Aromasin paclitaxel ERDs Taxotere DIEP Flap Latissimus Dorsi Flap ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Diagnosis: Breast Cancer

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Diagnosis: Breast Cancer

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

”

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Background & History of Breastcancer.org   Founded in 1999 by Marisa

Weiss, M.D., a Philadelphiaarea 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 heavilytrafficked breast cancer website in the world (source: Alexa) ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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 inperson and telephone interviews   Thousands of website visitors participated in several online surveys ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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…

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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.

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

Companies.

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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.

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Traditional Personalization Models   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?

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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”) ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Vocabulary Development 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 Perimenopausal •  Early Stage BC •  Advanced BC

Perspective •  Clinical •  Emotional •  Practical

Topic •  Environmental Risk Factors •  Genetic Risk Factors •  Symptoms, SelfDetection & 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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Vocabulary Development   Audience Facet   Provides a short list of major

audience groups for which the content is intended.

  Sample filters:   Technical or clinical content

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

intended Health Care providers (goes to Clinicians & Providers)   News or information about fundraising or events (goes to Press & Public)

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Vocabulary Development   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

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

on the most appropriate content for their situation.

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Vocabulary Development   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

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 (Partial list displayed.)

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Vocabulary Development
   Perspective Facet •  Coarse categorization of the

page's overall approach to a topic.

  Explanation:

Perspective Clinical Emotional Practical Press/Public

•  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.

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Vocabulary Development
   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.) ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Examples Topics Chemotherapy

Situation Undergoing Treatment

Perspective Practical

Contains content with a Practical tone. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Examples Topics Chemotherapy

Situation Undergoing Treatment

Perspective Practical

Contains content with a Clinical tone. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Examples Topics Surgery Recovery

Situation Undergoing Treatment

Clinical Characteristics Lymph Nodes Removed: 21

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Examples Audience Patients

Situation Undergoing Treatment

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

Treatment approved for pre-menopausal. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Examples Audience Patients

Situation Undergoing Treatment

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

Treatments only approved for post-menopausal. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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…

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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 highlyvetted medical content surrounding the Community

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Current Status: The Role of Community “Signature” field structured data

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Current Status: The Role of Community 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? ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

Current Status: The Role of Community 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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC

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

©2009 Taxonomy Strategies, LLC & Foraker Design, LLC