Transforming the Application of Cancer Staging with Intelligent Content
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Transforming the Application of Cancer Staging with Intelligent Content

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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 ...

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.

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    Transforming the Application of Cancer Staging with Intelligent Content Transforming the Application of Cancer Staging with Intelligent Content Presentation Transcript

    • Transforming the Application of Cancer Staging with Intelligent Content May 8, 2014
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved2 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved3 Who we are… • 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 • 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 @AJCCancer @singlesourceror
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved4 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved5 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.
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved6 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved7 AJCC’s 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved8 What is Cancer Staging? • Describes the extent or severity of a person’s cancer at time of diagnosis • Helps physician plan appropriate treatment • Used in estimating a person’s 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved9 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.
    • Facing the Challenge
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved11 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved12 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved13 Print publication 1-6th editions
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved14 Print publication 7th edition
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved15 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.
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved16 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)
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved17 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
    • Identifying a solution
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved19 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.
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved20 Precision Content™ • A holistic approach to content strategy helping to manage your investment in content transformation • Includes elements of – utility – usability, and – maintainability PrecisionContent™trademarkAscanInformationArchitectsLimited2013
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved21 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved22 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved23 Side-by-side comparison Before After
    • How it works
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved25 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved26 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved27 Together… • DITA/XML provides the framework • Information Mapping® provides the methodology, and • Content management provides the process to ensure sustainability
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved28 Infomation Mapping® • Robert Horn • Stanford University scholar • 50 years’ of experience
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved29 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved30 Ikea Instructions: LAFI
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved31 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved32 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? What’s the maximum speed of this car? PROCEDURE PROCESS PRINCIPLE CONCEPT STRUCTURE FACT
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved33 Standardized blocks of Information...
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved34 ...are assembled into information products
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved35 ...and reassembled for different contexts
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved36 Example
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved37 Beware of the iceberg! Presentation Analysis & Organization
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved38 6 research-based principles CHUNKING RELEVANCE LABELING CONSISTENCY INTEGRATED GRAPHICS ACCESSIBLE DETAIL
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved39 Exercise • How many words on the next slide can you memorize in 20 seconds?
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved40 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved41 The consistency principle Correct for consistent use of – words and phrases – parallel construction – effective reuse
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved42 After consistency analyst brake market stapler seat trader alternator investor calculator scissors engine pedal dashboard pen backer marker tape profit starter ruler prospect
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved43 The chunking principle Group information into small, manageable units
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved44 After chunking • market, scissors, analyst, brake, engine, starter, trader • pedal, ruler, seat, dashboard, backer, investor, pen • stapler, alternator, profit, prospect, calculator, marker, tape
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved45 The relevance principle Limit each unit of information to one – topic – purpose, or – idea
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved46 After relevance • analyst, market, trader, investor, backer, profit, prospect • stapler, calculator, scissors, pen, marker, tape, ruler • brake, clutch, gasket, engine, alternator, starter, pedal
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved47 The labeling principle Label each unit of information
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved48 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved49 The integrated graphics principle Use simple graphics to present information
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved50 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved51 Let’s try it again ... How many words on the next slide can you memorize in 20 seconds?
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved52 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved53 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.
    • Moving to XML
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved55 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved56 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.
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved57 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. <p><i>The Cancer Journal: The Journal of Principles & Practice of Oncology</i> provides an integrated view of modern oncology across <i>all</i> disciplines.</p> The Cancer Journal: The Journal of Principles & Practice of Oncology provides an integrated view of modern oncology across all disciplines.
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved58 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. <intro><cite>The Cancer Journal: The Journal of Principles & Practice of Oncology</cite> provides an integrated view of modern oncology across <em>all</em> disciplines.</intro> 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.
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved59 Semantic markup •Using semantic markup, we can –disambiguate content –search based on meaning –connect to other content, and –reuse or substitute new text.
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved60 What is DITA? (n. dit-uh) •(Darwin Information Typing Architecture) is an XML standard – developed in late 90’s 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved61 DITA publishing • Supports complex, multi-channel publishing to many common output formats • Add new formats or styles easily ?
    • Where do we go from here?
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved63 What we’ve 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved64 What we’ve 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved65 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
    • Copyright © 2014 AJCC and Ascan Information Architects Limited All Rights Reserved66 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
    • Laura Meyer Project Manager American Joint Committee on Cancer laurameyer@facs.org @laurameyerpro http://www.cancerstaging.org @AJCCancer Rob Hanna Chief Information Architect Ascan Information Architects Limited rob@infoarchitects.ca Cell +1 (416) 723-4183 http://www.infoarchitects.ca @singlesourceror Thank you