transforming the application of cancer staging with intelligent content
DESCRIPTION
Faced with the task of publishing the next edition of the AJCC Cancer Staging Manual, the staff at the American Joint Committee on Cancer (AJCC) realized that there had to be a better way to facilitate the updates to the content and distribution to a growing number of critical channels. In 2013, they turned their mind to Intelligent Content and enlisted the help of a team of professional technical communicators and information architects to devise a solution. Over the past four decades, the AJCC has used traditional medical publishers to produce and distribute print versions of the manual and staging forms used by clinicians worldwide to stage all forms of cancer to determine treatment and predict patient outcomes. Every seven years, world-renowned physicians gather to evaluate the science and produce updates to the cancer staging manual. With the rapid developments in cancer research and increased prevalence of electronic health records, the AJCC realized that their business model had to evolve. They required more agile publishing capabilities than the traditional publishers could offer. They also needed more control over their content to fulfill delivery to a growing number of distribution channels. Over the past year, the AJCC has transformed their content for the most prevalent forms of cancer using a specially-trained team of writers to improve upon the clarity and consistency of the information. This content sits on top of specialized DITA/XML allowing for sophisticated reuse and repurposing of the content. This session will present the business case for the Cancer Staging Content Transformation (CSCoT) project and discuss the wins and challenges of their Intelligent Content strategy.TRANSCRIPT
- 1. Transforming the Application of Cancer Staging with Intelligent Content May 8, 2014
2. Overview What is the American Joint Committee on Cancer? What is Cancer Staging? Cancer Staging is Changing Risks of Traditional Content Presentation Content Staging Transformation Project Intelligent Content Successes and Challenges 3. Who we are Laura Meyer AJCC 8th Edition Cancer Staging Manual Project Manager 7 years with the American College of Surgeons (ACS) Selected to lead organization-wide performance improvement effort Rob Hanna, IMCC CIP 20 years in technical communication Fellow of the Society for Technical Communication Certified in Information Mapping and as an Information Professional President of Ascan Information Architects Limited @AJCCancer @singlesourceror 4. As an Information Architect I make your information easier to use Analyzing your Information assets Business drivers, and End-user needs Building solutions that organize complex information Optimizing information for Usability Utility, and Maintainability 5. Intelligent Content Content that is not limited to one purpose technology, or output structurally rich and semantically aware, making it discoverable reusable reconfigurable, and adaptable. 6. What is AJCC? Committee of representatives from 20 professional organizations and US and Canadian public health entities that impact and measure cancer care AJCC writes the common language of cancer the cancer staging rules Rules are adopted by member organizations for application in their specific areas of care. Governments use cancer staging rules to measure frequency of disease in populations 7. AJCCs Role AJCC Cancer Staging Rules Communication Standardized Nomenclature Clinical Practice Staging & Prognosis Treatment Recommendations Clinical Trials Eligibility Stratification Research Reporting Longitudinal Cancer Instance Changing Spectrum Of Disease Treatment Efficacy Quality of Care 8. What is Cancer Staging? Describes the extent or severity of a persons cancer at time of diagnosis Helps physician plan appropriate treatment Used in estimating a persons prognosis (chance of recovery or occurrence) Provides the foundation for cancer care professionals to exchange information about patients Provides a common language for evaluating results of clinical trials and comparing results of different trials 9. What is Cancer Staging? For decades, many cancers described by purely anatomic details TNM Location and size of primary Tumor Lymph Node involvement has cancer spread to nearby nodes? Metastasis of disease has cancer spread to distant areas of the body? Based on combinations of TNM factors specific to each disease, a stage of 0, I, II, III, IV is assigned. 10. Facing the Challenge 11. Staging is Changing Anatomic model of TNM has place in worldwide cancer care To stay ahead of this disease we must look to measurement of cancer on molecular level: Increasing availability of high throughput testing Advances in informatics and computational biology: EHR, data interoperability, real-time risk calculators Maturing data on prognostic and predictive factors = growing evidence base Sophistication of personalized therapies and diagnostic modalities Increased global accessibility of treatment and molecular advances 12. Staging is Changing Information about cancer is reaching a critical mass, and it needs to be organized. AJCC is looking to add biologic factors to the anatomic basis of TNM to improve patient care on an individual level. Anatomic and biologic data needs to be interoperable across all cancer care professions through data collection tools such as electronic health records, quality measurement and surveillance registries 13. Print publication 1-6th editions 14. Print publication 7th edition 15. Risks of Traditional Content Presentation FACT: AJCC Cancer Staging Manuals are written by the best cancer specialists in the world. FACT: AJCC Cancer Staging Rules are based on robust, validated national and international data sets When it comes to the science, there is no question of the validity of staging rules. We need to fix the presentation of staging rules to reduce instances of misinterpretation. 16. Risks of Traditional Content Presentation AJCC Content presented in analog form print only Users have to read rules, process and interpret information, document information (Stage) 17. Risks of Traditional Content Presentation How did we identify the problem? Many questions from cancer registrars Collaborative Stage Data Collection System Reliability Survey E-Staging Tool Development 18. Identifying a solution 19. Cancer Staging Content Transformation Project (CSCoT) Objectives of CSCoT are to improve efficiency of updates harmonize terminology and structure enhance content to help eliminate errors, and provide extensive flexibility for licensing. 20. Precision Content A holistic approach to content strategy helping to manage your investment in content transformation Includes elements of utility usability, and maintainability PrecisionContenttrademarkAscanInformationArchitectsLimited2013 21. Excerpt from the 7th edition breast cancer chapter pN3 description only closely mirrors descriptions for pN3a +pN3b + pN3c Use of footnotes confusing Clinically detected and Not clinically detected are not exact opposites Inconsistent enumeration of lymph nodes 22. Same content after Information Mapping 44.2% reduction in word count 20% reduction in passive voice 18.4% increase in Flesch Reading Ease score 30% increase in white space Elimination of footnotes Addition of labels and visual elements 23. Side-by-side comparison Before After 24. How it works 25. DITA/XML is An agnostic structured framework for technical communication An open standard gaining rapid adoption Extensible across industries Lacking a consistent, robust authoring methodology 26. Information Mapping is An agnostic structured authoring methodology for business A proprietary standard with global reach Teachable to any audience of practitioner Lacking modern technology delivery framework 27. Together DITA/XML provides the framework Information Mapping provides the methodology, and Content management provides the process to ensure sustainability 28. Infomation Mapping Robert Horn Stanford University scholar 50 years of experience 29. Language Arts Language Arts for Personal Response (LAFPR) To emotionally engage the reader Techniques: narrative style varied vocabulary & sentence structure withholding information Writer driven Meant to be READ Language Arts for Information (LAFI) To convey information that readers need to use Techniques: consistent modular structure concise, direct vocabulary use of graphics Reader driven Meant to be USED 30. Ikea Instructions: LAFI 31. Ikea Instructions: LAFPR If novelist Michael Ondaatje wrote Ikea instructions . The eel-shaped talisman squirms inside the raspy recycled box. A series of quarter turns clock hands marking time bonds back to base. An alphabet of connections in English and French. A into groove B. C slots into D. Chipboard credenza communicating Swedish hegemony. Author/parodist: Geoff Thomas Globe & Mail, August 27, 2009 32. Information types How do I change a tire? How does the engine work? Should I drive on the left or on the right in the UK? What is an airbag? What are the parts of my dashboard? Whats the maximum speed of this car? PROCEDURE PROCESS PRINCIPLE CONCEPT STRUCTURE FACT 33. Standardized blocks of Information... 34. ...are assembled into information products 35. ...and reassembled for different contexts 36. Example 37. Beware of the iceberg! Presentation Analysis & Organization 38. 6 research-based principles CHUNKING RELEVANCE LABELING CONSISTENCY INTEGRATED GRAPHICS ACCESSIBLE DETAIL 39. Exercise How many words on the next slide can you memorize in 20 seconds? 40. How many words can you memorize in 20 seconds? analyst brake market stapler seat traders alternator investor calculators scissors engine pedal dashboard pen backers marker tape profit starter ruler prospects 41. The consistency principle Correct for consistent use of words and phrases parallel construction effective reuse 42. After consistency analyst brake market stapler seat trader alternator investor calculator scissors engine pedal dashboard pen backer marker tape profit starter ruler prospect 43. The chunking principle Group information into small, manageable units 44. After chunking market, scissors, analyst, brake, engine, starter, trader pedal, ruler, seat, dashboard, backer, investor, pen stapler, alternator, profit, prospect, calculator, marker, tape 45. The relevance principle Limit each unit of information to one topic purpose, or idea 46. After relevance analyst, market, trader, investor, backer, profit, prospect stapler, calculator, scissors, pen, marker, tape, ruler brake, clutch, gasket, engine, alternator, starter, pedal 47. The labeling principle Label each unit of information 48. After labeling Stock market analyst, market, trader, investor, backer, profit, prospect Office supplies stapler, calculator, scissors, pen, marker, tape, ruler Car parts brake, clutch, gasket, engine, alternator, starter, pedal 49. The integrated graphics principle Use simple graphics to present information 50. After integrated graphics Stock market Office supplies Car parts analyst stapler brake market calculator seat trader scissors dashboard investor pen engine backer marker alternator profit tape starter prospect ruler pedal 51. Lets try it again ... How many words on the next slide can you memorize in 20 seconds? 52. Now... how many can you memorize? Vegetables Computer parts Instruments peas hard drive violin endive sound card harp carrots monitor piano spinach mouse trumpet celery processor cello broccoli flash drive flute tomato keyboard guitar 53. Mapped Content Mapped information meets 2 fundamental needs Mapped information serves the needs of the human brain to find understand use, and retain information. Mapped information serves the needs of technology to manage information that has a standard structure is searchable, and reusable. 54. Moving to XML 55. What are markup languages? pre-date desktop publishing and the Internet tell computers how to handle data such as how to render electronic content on a page categorized as either presentation, or semantic markup 56. Presentation markup With traditional presentation markup, the editor instructs the typesetter to italicize the citation The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines. The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines. The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines. ital. ital. 57. Presentation markup With electronic presentation markup, we markup the paragraph and italicize the citation for publication This is typical of web pages using hypertext markup (HTML) The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines.
The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines.
The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines. 58. Semantic markup With semantic markup, we markup the content to describe the meaning of the text Publishing stylesheets interpret the meaning from the markup and apply appropriate styles specific to the publishing context The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines. The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines. The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines. The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines. 59. Semantic markup Using semantic markup, we can disambiguate content search based on meaning connect to other content, and reuse or substitute new text. 60. What is DITA?(n. dit-uh) (Darwin Information Typing Architecture) is an XML standard developed in late 90s at IBM, and given to the open source community in 2004 used for topic-based, structured authoring designed for scalability using mechanisms for specialization and inheritance defining an extendable set of information types 61. DITA publishing Supports complex, multi-channel publishing to many common output formats Add new formats or styles easily ? 62. Where do we go from here? 63. What weve accomplished The successes of the first phase of the CSCoT project include Ascan transformed selected chapters of the 7th edition Ascan built new XML data structures created for cancer staging AJCC internal SMEs validated the transformed content Ascan and AJCC staff set up mapping workflows on StageXchange Ascan validated and republished bibliographies for transformed 7th edition Expert physicians scheduled to review selected chapters after transformation 64. What weve learned Not-for-profit Budget Move from traditional publisher to self publishing model Availability of volunteer subject matter experts (SMEs) Large number of volunteer subject matter experts: Availability and respect for time Coordination with small number of staff and vendor resources Communication 65. Physician review/reaction Staging tables definitely easier to scan and understand Tested on fellows Self-administered time test Surprising exposure of inconsistencies in content structure and terminology, amount of content open to interpretation Eager to test on other users 66. Next steps 8th edition and staging calculator Incorporate lessons learned from pilot into 8th Edition authoring process Use pilot chapters to continue development of staging calculator Usability testing 8th Edition scheduled for release in Fall 2016 67. Rob Hanna Chief Information Architect Ascan Information Architects Limited [email protected] Cell +1 (416) 723-4183 http://www.infoarchitects.ca @singlesourceror Laura Meyer Project Manager American Joint Committee on Cancer [email protected] @laurameyerpro http://www.cancerstaging.org @AJCCancer Thank you