Developing Custom Vocabularies for Personalized Web Content
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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

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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  • 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. 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. 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. 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. Introduction: Why are we doing this? “You have breast cancer...” ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 6. Breast cancer diagnosis terms… ? ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 7. Breast cancer diagnosis terms… Subtraction Probe Technology Chromogenic In Situ Hybridization ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 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. 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. 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. Breast cancer treatment terms… ? ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 12. Breast cancer treatment terms… raloxifene ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 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. 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. 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. Diagnosis: Breast Cancer ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 17. Diagnosis: Breast Cancer ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Examples Topics Situation Perspective Chemotherapy Undergoing Treatment Practical Contains content with a Practical tone. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 40. Examples Topics Situation Perspective Chemotherapy Undergoing Treatment Practical Contains content with a Clinical tone. ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 41. Examples Topics Situation Clinical Characteristics Surgery Recovery Undergoing Treatment Lymph Nodes Removed: 21 ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 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. 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. 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. 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. 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. Current Status: The Role of Community “Signature” field structured data ©2009 Taxonomy Strategies, LLC & Foraker Design, LLC
  • 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. 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. 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. 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. 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