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.

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. 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

8. 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

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
PrecisionContent™trademarkAscanInformationArchitectsLimited2013

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?
What’s 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. Let’s 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.
<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.

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.
<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.

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 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

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 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

64. 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

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
rob@infoarchitects.ca
Cell +1 (416) 723-4183
http://www.infoarchitects.ca
@singlesourceror
Laura Meyer
Project Manager
American Joint Committee on Cancer
laurameyer@facs.org
@laurameyerpro
http://www.cancerstaging.org
@AJCCancer
Thank you