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


DEVELOPMENT OF CUSTOM
VOCABULARIES TO DELIVER
PER...
About Us: Mike Lauruhn

         Over 8 years working at Internet companies.
             Member, Taxonomy Strategies
  ...
About Us: Derek Olson

         Vice President, Foraker Design
         Over 9 years of experience building Websites and...
Topics

  Introduction
  Background & History of Breastcancer.org
  New Personalization Initiatives
  Vocabulary and M...
Introduction: Why are we doing this?


                  “You have
                   breast
                   cancer...”...
Breast cancer diagnosis terms…




             ?
                         ©2009 Taxonomy Strategies, LLC & Foraker Design...
Breast cancer diagnosis terms…




Subtraction Probe Technology Chromogenic In Situ Hybridization




                    ...
Breast cancer diagnosis terms…

                            CA 15.3

 Colloid
                           Thermography     ...
Breast cancer diagnosis terms…

                              CA 15.3
        ER/PR+                  Digital Tomosynthesi...
Breast cancer diagnosis terms…

                 Medullary    CA 15.3            Positive margins
        ER/PR+          ...
Breast cancer treatment terms…




             ?
                         ©2009 Taxonomy Strategies, LLC & Foraker Design...
Breast cancer treatment terms…




                raloxifene




                             ©2009 Taxonomy Strategies, ...
Breast cancer treatment terms…

 Aromatase Inhibitors

                Axillary Lymph Node Dissection
fulvestrant


      ...
Breast cancer treatment terms…

                                                          tamoxifen
  Aromatase Inhibitors...
Breast cancer treatment terms…
      Autologous Reconstruction                        tamoxifen
  Aromatase Inhibitors    ...
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 M...
Breastcancer.org’s Mission Statement:


“   To help women and
    their loved ones make
    sense of the complex
    medic...
Background & History of Breastcancer.org

  Founded in 1999 by Marisa
   Weiss, M.D., a Philadelphia-
   area radiation o...
Background & History of Breastcancer.org
Fulfilling the mission:
  Professional Advisory Board of over 70
     experts in...
User Research

  Breastcancer.org began usability testing in 2003, and
    completed a website redesign in 2004 that offe...
Lessons from User Research…


  Users needed more than just clear
   navigation and powerful search
   amidst heavy “medi...
Topics

  Introduction
  Background & History of Breastcancer.org
  New Personalization Initiatives
  Vocabulary and M...
Traditional Personalization Models

  E-Commerce Model
     Based on purchase history, browse affinity.
     Shoppers s...
Traditional Personalization Models - Drawbacks

     Doesn’t allow for conditions and considerations.
     Assumes you a...
Traditional Personalization Models

  News Alerts and RSS Model
     Based on topical subjects.
     Almost always prop...
Traditional Personalization Models - Drawbacks

  Topics and metadata are inconsistently applied to content.
  Topics ca...
Traditional Personalization Models

  Fell short due to the complexity of diagnosis situations
  “Personalization” had t...
Further Lessons from User Research…


Risks of Personalization:             “Early stage” vs.
                            ...
Topics

  Introduction
  Background & History of Breastcancer.org
  New Personalization Initiatives
  Vocabulary and M...
Vocabulary Development

  Collaborative meetings that included:
     Foraker Design
     Breastcancer.org
      –  Edit...
Vocabulary Development

                 Five vocabularies were developed to organize content.
                           ...
Vocabulary Development

  Audience Facet                                       Audience
      Provides a short list of m...
Vocabulary Development

  Situation Facet                                     Situation
     Short list of major phases ...
Vocabulary Development

  Clinical Characteristics Facet          Clinical Characteristics
      Include types of breast...
Vocabulary Development


  Perspective Facet                                  Perspective
   •  Coarse categorization of ...
Vocabulary Development


  Topics Facet                                             Topic
     Major subject categories ...
Examples

      Topics                 Situation                 Perspective
 Chemotherapy           Undergoing Treatment ...
Examples

      Topics                 Situation                 Perspective
 Chemotherapy           Undergoing Treatment ...
Examples

     Topics             Situation              Clinical Characteristics
Surgery Recovery   Undergoing Treatment ...
Examples
    Audience             Situation               Clinical Characteristics
Patients           Undergoing Treatment...
Examples
    Audience            Situation               Clinical Characteristics
Patients          Undergoing Treatment  ...
Topics

  Introduction
  Background & History of Breastcancer.org
  New Personalization Initiatives
  Vocabulary and M...
Current Status

  Meta data schema and controlled vocabulary is currently
   in implementation phase on all 5,000+ pages ...
Current Status: Discussion Boards Pilot
Surprise discovery helps counter personalization risks
  Breastcancer.org launche...
Current Status: The Role of Community

“Signature” field structured data




                                    ©2009 Tax...
Current Status: The Role of Community
13 “Clinical Characteristics”
began being captured in
September 2007
   Stage
   L...
Current Status: The Role of Community
13 “Clinical Characteristics” for web content map to
“Diagnosis Information” in Comm...
Looking Ahead

Currently in funding stage: Pilot program for collecting
treatment information, status, timing for Discussi...
Looking Ahead

Currently in funding stage: Pilot program for collecting
clinical/diagnosis information from new users outs...
Questions?

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

Derek Olson
(303) 4...
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Developing Custom Vocabularies for Personalized Web Content

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Case study of the development of custom vocabularies and metadata schema to deliver personalized content to users of a nonprofit breast cancer website

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Developing Custom Vocabularies for Personalized Web Content

  1. 1. 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
  2. 2. 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
  3. 3. 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
  4. 4. 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
  5. 5. Introduction: Why are we doing this? “You have breast cancer...” ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  6. 6. Breast cancer diagnosis terms… ? ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  7. 7. Breast cancer diagnosis terms… Subtraction Probe Technology Chromogenic In Situ Hybridization ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  8. 8. 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
  9. 9. Breast cancer diagnosis terms… CA 15.3 ER/PR+ Digital Tomosynthesis Colloid Papillary Thermography Cribriform CA125 Subtraction Probe Technology Chromogenic In Situ Hybridization Mucinous Ki-67 Comedo Her2/neu Oncogene Overexpression Progesterone Receptors CA 27.29 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  10. 10. Breast cancer diagnosis terms… Medullary CA 15.3 Positive margins ER/PR+ Digital Tomosynthesis Colloid Papillary Thermography Cribriform CA125 Ductal Lavage Ductal Carcinoma in situ Subtraction Probe Technology Chromogenic In Situ Hybridization Mucinous Ki-67 ImmunoHistoChemistry Comedo Her2/neu Oncogene Overexpression Progesterone Receptors CA 27.29 Fluorescence In Situ Hybridization ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  11. 11. Breast cancer treatment terms… ? ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  12. 12. Breast cancer treatment terms… raloxifene ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  13. 13. Breast cancer treatment terms… Aromatase Inhibitors Axillary Lymph Node Dissection fulvestrant raloxifene Faslodex Femara DIEP Flap ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  14. 14. Breast cancer treatment terms… tamoxifen Aromatase Inhibitors Lumpectomy Axillary Lymph Node Dissection fulvestrant raloxifene toremifene Faslodex TRU-QUANT Arimidex Femara Aromasin ERDs DIEP Flap ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  15. 15. Breast cancer treatment terms… Autologous Reconstruction tamoxifen Aromatase Inhibitors Lumpectomy Mastectomy SERDs Axillary Lymph Node Dissection 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 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  16. 16. Diagnosis: Breast Cancer ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  17. 17. Diagnosis: Breast Cancer ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  18. 18. 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
  19. 19. 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
  20. 20. 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) ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  21. 21. 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
  22. 22. 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 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  23. 23. 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
  24. 24. 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
  25. 25. 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
  26. 26. 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
  27. 27. 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
  28. 28. 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
  29. 29. 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
  30. 30. 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”) ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  31. 31. 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
  32. 32. 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
  33. 33. Vocabulary Development 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 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  34. 34. Vocabulary Development   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) ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  35. 35. Vocabulary Development   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. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  36. 36. Vocabulary Development   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.) ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  37. 37. 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. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  38. 38. 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.) ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  39. 39. Examples Topics Situation Perspective Chemotherapy Undergoing Treatment Practical Contains content with a Practical tone. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  40. 40. Examples Topics Situation Perspective Chemotherapy Undergoing Treatment Practical Contains content with a Clinical tone. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  41. 41. Examples Topics Situation Clinical Characteristics Surgery Recovery Undergoing Treatment Lymph Nodes Removed: 21 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  42. 42. Examples Audience Situation Clinical Characteristics Patients Undergoing Treatment Estogen Receptor: Pos. Progesterone Receptor: Pos. Pre-menopausal Treatment approved for pre-menopausal. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  43. 43. Examples Audience Situation Clinical Characteristics Patients Undergoing Treatment Estogen Receptor: Pos. Progesterone Receptor: Pos. Pre-menopausal Treatments only approved for post-menopausal. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  44. 44. 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
  45. 45. 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
  46. 46. 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 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  47. 47. Current Status: The Role of Community “Signature” field structured data ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  48. 48. 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
  49. 49. 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
  50. 50. 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
  51. 51. 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
  52. 52. 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 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
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