Grand Rounds given at the Mayo clinic on the topic of connecting health care systems for cancer patients.

1. Bradford W. Hesse, PhD
Chief, Health Communication and
Informatics Research Branch
The Role of Information Technology and
Health Communication in Health Care
Delivery:The Case of Cancer

2. Jessie Gruman, Pres. CFAH
In Memoriam
December 7, 1953
- July 14, 2014

3. “The millions of dollars of
biomedical research … aimed at a
disease that was costing 10’s of
thousands of dollars to treat and
it ultimately relied on the actions
of a skinny, weak, scared 20-year
old to have its impact.”
Jessie Gruman

4. “Those of us with multiple chronic
conditions may consult many
physicians in the course of a year.
Last year, I saw 11. Not one of my
doctors has ever communicated
directly with another… I am the sole
arbiter of who gets what information
in what format and when.”
Jessie Gruman

5. No Ma&er Where:
The Movie Dr. Kevin B. Johnson
Filmmaker

6. Question:
How do we connect our systems for
patients — and on behalf of patients
— to ensure reliable, proactive, and
error-proof communications?

7. 1996 - 2016
Rise of the “Connected
Patient”

8. “Almost half of the
Internet users in 1997
reported looking for
health information”
-- Rice & Katz
Source: Rice RE, Katz JE. The Internet and health communication : experiences
and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.

9. Search Term % Using Term
Depression 19%
Allergies/sinus 16%
Cancer 15%
Bipolar disorder 14%
Arthritis/rheumatism 10%
High blood pressure 10%
Migraine 9%
Anxiety disorder 9%
Heart disease
Sleep disorders
8%
8%
Terms Searched
Source: Rice RE, Katz JE. The Internet and health communication : experiences
and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.

10. Search Term % Using Term
Depression 19%
Allergies/sinus 16%
Cancer 15%
Bipolar disorder 14%
Arthritis/rheumatism 10%
High blood pressure 10%
Migraine 9%
Anxiety disorder 9%
Heart disease
Sleep disorders
8%
8%
Terms Searched
Source: Rice RE, Katz JE. The Internet and health communication : experiences
and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.

11. Health Informa6on Na6onal Trends Survey (HINTS)
hints.cancer.gov Funded 2001

12. Where would you prefer to go for cancer
informa6on?
Source: Hesse BW, Nelson DE, Kreps GL, et al.Trust and sources of health information: the impact of the Internet and its implications for health care
providers: findings from the first Health Information NationalTrends Survey.Arch Intern Med. Dec 12-26 2005;165(22):2618-2624.

13. Where did you go for cancer informa6on?
Source: Hesse BW, Nelson DE, Kreps GL, et al.Trust and sources of health information: the impact of the Internet and its implications for health care
providers: findings from the first Health Information NationalTrends Survey.Arch Intern Med. Dec 12-26 2005;165(22):2618-2624.

14. See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information
National Trends Survey. Washington DC: National Cancer Institute. 2007.
*51.6% looked for self
*45.7% looked for others
2003*
Lila Rutten
Mayo Clinic
Rick Moser
NCI
Ellen Beckjord
U of Pittsburgh Med
Diffusion of online health informa6on seeking

15. See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information
National Trends Survey. Washington DC: National Cancer Institute. 2007.
*51.6% looked for self
*45.7% looked for others
2003*
2005*
*58.4% looked for self
*59.4% looked for others
Lila Rutten
Mayo Clinic
Rick Moser
NCI
Ellen Beckjord
U of Pittsburgh Med
Diffusion of online health informa6on seeking

16. Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4
2010;362(9):859-860.
HINTS Trends: New England Journal 2010
Lila Rutten
Mayo Clinic
Rick Moser
NCI

17. Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4
2010;362(9):859-860.
HINTS Trends: New England Journal 2010
Lila Rutten
Mayo Clinic
Rick Moser
NCI

18. Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4
2010;362(9):859-860.
HINTS Trends: New England Journal 2010
Lila Rutten
Mayo Clinic
Rick Moser
NCI

19. Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4
2010;362(9):859-860.
HINTS Trends: New England Journal 2010
Lila Rutten
Mayo Clinic
Rick Moser
NCI

20. Trends Toward Consumer
Engagement Con6nue to Climb
Source: Hesse BW, Greenberg AJ, Rutten LJ. The Role of Internet Resources in Clinical Oncology:
Promises and Challenges. Nature Reviews; Clinical Oncology (in press).
Lila Rutten
Mayo Clinic
Allie Greenberg
Mayo Clinic

21. Tracking & Adjus6ng HP 2020
Goals: Access to the Internet
Source: Hesse BW, Gaysynsky A, Vieux S, et al. Meeting the Healthy People 2020 Goals: Using the
Health Information National Trends Survey to Monitor Progress on Health Communication Objective
Journal of Health Communication. 2014;19(ISS12).

22. Tracking & Adjus6ng HP 2020
Goals: Broadband & Mobile

23. The President’s Cancer
Panel
2014 - 2016

24. Members
Barbara K. Rimer, DrPH
Univ. of North Carolina at Chapel Hill
Hill Harper, JD
Cancer Survivor, Actor, and Best-Selling
Author
Owen N. Witte, MD
University of California Los Angeles

25. Commission and Charge
Commissioned by 1971 Cancer Act.
• To review status of the National
Cancer Program,
• To identify “gaps” in need of
attention,
• Report directly to the President of
the US with findings.

26. 2014-2015 Series
Connected Health: Improving
Patients’ Engagement and
Activation for Cancer-Related
Health Outcomes

27. Primary Prevention
Loss to Follow-up:
e.g.,“70% smokers visit healthcare,
but few receive adequate follow-up,”
Michael Fiore (2013)
Communica6on Errors in
Cancer Care

28. Primary Prevention
Loss to Follow-up:
e.g.,“70% smokers visit healthcare,
but few receive adequate follow-up,”
Michael Fiore (2013)
Secondary Prevention:
Failure to Screen
e.g., 56% of late stage cervical
cancer cases in community
hospital failed to screen (Taplin)
Secondary Prevention:
Loss to Follow-up
e.g., 7% labs, 8% image loss for
abnormal findings at 4 weeks
(Smith et al, 2013)
Communica6on Errors in
Cancer Care

29. Primary Prevention
Loss to Follow-up:
e.g.,“70% smokers visit healthcare,
but few receive adequate follow-up,”
Michael Fiore (2013)
Secondary Prevention:
Failure to Screen
e.g., 56% of late stage cervical
cancer cases in community
hospital failed to screen (Taplin)
Secondary Prevention:
Loss to Follow-up
e.g., 7% labs, 8% image loss for
abnormal findings at 4 weeks
(Smith et al, 2013)
Treatment:Adherence
Kondryn et al. (Lancet Onc, 2011):
63% of teens & young adults
struggle with adherence to cancer
Rx regimens.
Communica6on Errors in
Cancer Care

30. Primary Prevention
Loss to Follow-up:
e.g.,“70% smokers visit healthcare,
but few receive adequate follow-up,”
Michael Fiore (2013)
Secondary Prevention:
Failure to Screen
e.g., 56% of late stage cervical
cancer cases in community
hospital failed to screen (Taplin)
Secondary Prevention:
Loss to Follow-up
e.g., 7% labs, 8% image loss for
abnormal findings at 4 weeks
(Smith et al, 2013)
Treatment:Adherence
Kondryn et al. (Lancet Onc, 2011):
63% of teens & young adults
struggle with adherence to cancer
Rx regimens.
Symptom Management
Two month survivor benefit for late
stage lung cancer patients with
connected “clinician
reports” (Gustafson, et al 2009)
Survivorship
Communication problems blamed
for missed recurrence, missed new
cancers, and secondary effects (IOM
Lost in Transition, 2005)
Communica6on Errors in
Cancer Care

31. Joint Commission highlights role of
communication discontinuities
❑ Total number of preventable
medical errors from all
sources exceeds 17 million
each year
❑ Joint Commission’s Sentinel
Database reports 70% of all
reported events had
communication as root cause
http://www.jointcommission.org/assets/1/18/Root_Causes_by_Event_Type_2004-2014.pdf

32. Accoun6ng for Two Types
of Error
Errors of Commission:
Doing something wrong
(root cause of detectable
errors)

33. Accoun6ng for Two Types
of Error
Errors of Commission:
Doing something wrong
(root cause of detectable
errors)
Errors of Omission:
Failing to do something
right (e.g., Pap failure - leads
to more insidious
consequences)

34. Stresses that will likely exacerbate
fractures, obstruct progress
http://www.iom.edu/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx
Stresses on Healthcare
❑ Aging demographics
❑ Increasing chronic disease
❑ Complexity in care
❑ Increase for diseases in remission
❑ Shrinking work force
❑ Rise in treatment costs

35. http://www.iom.edu/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx
Creating a Connected Care System for
Patients & Providers (ASCO)
Creating a system that is:
❑ Predictive
❑ Preemptive
❑ Personalized
❑ Participative

36. http://www.iom.edu/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx
Creating a Connected Care System for
Patients & Providers (ASCO)

37. Four Primary Dimensions of an
Ideal Future
Personal
Health
Information &
Data Sharing
Person &
Family
Centered Care
Devices,
Sensors, &
Apps
National
Health
Information
Infrastructure

38. ❑ Personal access to physiologic and clinical
data contributes to a culture of health and
better self management
❑ “Data Altruism:” research participation at a
massive scale
❑ Patient Generated Health Data (PRO’s,
sensors) inform practice
Personal Health & Data Sharing

39. ❑ Patient and family-centric system
oncology and primary care system
❑ Patients report feeling more
“connected” to their cancer care
providers - help just a click or phone
call away
Person- and Family-Centered Care

40. ❑ Connected technologies create
ubiquitous access opportunities
across populations & across
geographic boundaries
❑ Behavioral support built into
decisional architectures making
evidence-based medicine & healthy
living the easy choices
Devices, Sensors, & Apps Built
into the Health Environment

41. ❑ ONC reaches its 2020 goal of an
interoperable infrastructure for data
flow controlled by individuals
❑ Cancer prevention, control, treatment,
and survivorship improves, with
greater connectivity and fewer
discontinuities
National Health Information
Infrastructure / Interoperability

42. Bringing it All Together:
Oncology Informatics

43. *Source: Jemal,A., Siegel, R., Xu, J., & Ward, E. Cancer statistics, 2010. CA Cancer J Clin, 60(5), 277-300.
John Seffrin, CEO American Cancer Society
“We know what kinds of things need to be
done to increase the number of people who
survive from 350 per day to1,000.”
Lives saved (annually): 1975 to 2005

44. How can we
connect
systems?

46. Richard Schilsky
Chief Medical Officer, ASCO
1. The Learning Oncology System

47. Richard Schilsky
Chief Medical Officer, ASCO
1. The Learning Oncology System
April Oh
National Cancer Institute
2. Reducing Disparities, Pop Health

48. Richard Schilsky
Chief Medical Officer, ASCO
1. The Learning Oncology System Warren Kibbe
National Cancer Institute
3. Precision Medicine
April Oh
National Cancer Institute
2. Reducing Disparities, Pop Health

49. Richard Schilsky
Chief Medical Officer, ASCO
1. The Learning Oncology System Warren Kibbe
National Cancer Institute
3. Precision Medicine
Alex Krist
Virginia Commonwealth
4. Patient Engagement
April Oh
National Cancer Institute
2. Reducing Disparities, Pop Health

50. Richard Schilsky
Chief Medical Officer, ASCO
1. The Learning Oncology System Warren Kibbe
National Cancer Institute
3. Precision Medicine
Katherine Kim
UC California Davis
5. Point of Need
Alex Krist
Virginia Commonwealth
4. Patient Engagement
April Oh
National Cancer Institute
2. Reducing Disparities, Pop Health

52. Chapters 6-10
Glen Morgan,
PhD
Chapter 6

53. Stephen Taplin,
MD MPH
Chapters 6-10
Glen Morgan,
PhD
Chapter 6 Chapter 7

54. Stephen Taplin,
MD MPH
Chapters 6-10
Glen Morgan,
PhD
Bradford Hirsch,
MD
Amy Abernethy,
MD, PhD
Chapter 6 Chapter 7 Chapter 8

55. Stephen Taplin,
MD MPH
Chapters 6-10
Glen Morgan,
PhD
Bradford Hirsch,
MD
Amy Abernethy,
MD, PhD
Ellen Beckjord,
PhD, MPH
Lori DuBenske,
PhD
Chapter 6 Chapter 7 Chapter 8
Chapter 9
Chapter 10

57. Chapters 11 & 15 Data
Visualiza:on & Human
Percep:on
Chapter 11
Eberechukwu
Onukwugha, PhD
Ben Shneiderman,
PhD
Catherine Plaisant,
PhD

58. Chapters 11 & 15 Data
Visualiza:on & Human
Percep:on
Chapter 11
Eberechukwu
Onukwugha, PhD
Ben Shneiderman,
PhD
Catherine Plaisant,
PhD
Chapter 15
Todd Horowitz,
PhD

59. Chapters 12 - 13
Behavioral Informa:cs &
Communica:on
Chapter 12
David Ahern,
PhD

60. Chapters 12 - 13
Behavioral Informa:cs &
Communica:on
Chapter 12
David Ahern,
PhD
Chapter 13
Bradford
Hesse, PhD

61. Chapters 14 Advances in
Surveillance
Chapter 14
Lynne Penberthy,
MD MPH

62. Chapters 14 Advances in
Surveillance
Advanced Natural
Language Processing
Chapter 14
Lynne Penberthy,
MD MPH

64. Chapters 16-19 The New
Ecosystem
16. Health 2.0: Smart Patients

65. Chapters 16-19 The New
Ecosystem
16. Health 2.0: Smart Patients
17. Crowdsourcing: Patients Like Me

66. Chapters 16-19 The New
Ecosystem
16. Health 2.0: Smart Patients
17. Crowdsourcing: Patients Like Me
18. Big Data: New Methods

67. Chapters 16-19 The New
Ecosystem
16. Health 2.0: Smart Patients
17. Crowdsourcing: Patients Like Me
18. Big Data: New Methods
19. Cyberinfrastructure: MD Anderson

68. Chapter 20:
• Bright Spots
• Post HITECH world
• Building the future
together

69. Final Thoughts

70. The President’s Cancer Panel Report
Due out in Summer 2016

71. The President’s Cancer Panel Report
Due out in Summer 2016
Recommendations

72. The FCC Tackles “Connec6on” as
Crucial Infrastructure in Health
Source: https://www.fcc.gov/about-fcc/fcc-initiatives/connect2healthfcc

73. The FCC Tackles “Connec6on” as
Crucial Infrastructure in Health
Source: https://www.fcc.gov/about-fcc/fcc-initiatives/connect2healthfcc

74. Source: Gee PM, Greenwood DA, Paterniti DA, Ward D, Miller LM. The eHealth Enhanced Chronic Care Model: a
theory derivation approach. J Med Internet Res. 2015;17(4):e86.
Need New Models of Connected Care

76. A “Moon Shot” Metaphor:
Using Technology to Propel/ Protect People

77. Connected Systems for
Patients as the
Guidance System
Thank You