This document discusses connecting people through smart and connected health technologies. It describes how personal health data from sources like social media, fitness trackers, and electronic health records can be combined with population data to benefit individuals and public health. Challenges include balancing personal access to data with privacy and establishing standards for sharing data across different systems and organizations.

1. SMART AND CONNECTED
HEALTH
Bradford W. Hesse, PhD
Chief, Health Communication and
Informatics Research Branch
Tuesday, October 29, 2013
Nov 29, 2012

2. How do we stand up to cancer?
Who will make this
happen?
President’s Cancer Panel
Report (2007-2008)
Work together across National Cancer Program
Tuesday, October 29, 2013

3. The National Cancer Program
Tuesday, October 29, 2013

4. Question:
Is there a mechanism for
collective action? How can we
connect the “National Cancer
Program?”
Tuesday, October 29, 2013

5. Betty White, Saturday Night Live
May 8, 2010
Tuesday, October 29, 2013

6. Founded: February 4, 2004
Registered Users: 955,000,000
Distribution: World wide
Reach: 45 % global Internet*
Founded: January 15, 2001
Registered Users: 35,000,000
Available in: 285 languages
Reach: 14 % global Internet*
* Total Global Internet Users (December 31, 2011): 2,267,233,742
Tuesday, October 29, 2013

7. Founded: September 4, 1998
Revenue: $37.905 billion
Distribution: World wide
Reach: 48 % global Internet*
Founded: February 14, 2005
Entries: 48 hours / minute
8 years / per day
Available in: 54 languages
Reach: 37 % global Internet*
Tuesday, October 29, 2013

8. TIME Endorses Participative Media as the
Accomplishment of year (2005)
Tuesday, October 29, 2013

9. TIME Endorses Participative Media as the
Accomplishment of year (2005)
Characteris*cs
of
new
Web
• Pla$orms
for
Par+cipa+on
• Harnessing
“Collec+ve
Intelligence”
• Data
as
the
new
“Intel
Inside”
Tuesday, October 29, 2013

10. TIME Endorses Participative Media as the
Accomplishment of year (2005)
Characteris*cs
of
new
Web
• Pla$orms
for
Par+cipa+on
• Harnessing
“Collec+ve
Intelligence”
• Data
as
the
new
“Intel
Inside”
APPLIED TO HEALTH?
Tuesday, October 29, 2013

11. Using the Power of Massive Parallelism:
“Citizen Science”
• Invested
$50
million
in
Parkinson’s
research
• Started
public
blog
on
LRRK2
• Is
leveraging
the
power
of
“big
data”
to
accelerate
the
science
• Helped
found,
with
wife
Anne
Wojcicki,
23andMe
Tuesday, October 29, 2013

12. Traditional Model
• Hypothesis
• Studies
• Data aggregation
• Analysis
• Writing
• Submission
• Acceptance (NEJM)
• Publication
Time Elapsed: 6 years
Tuesday, October 29, 2013

13. Genetics Initiative
• Tool construction
• Recruitment
• Analysis
• Presentation
Time Elapsed: 8 months
Tuesday, October 29, 2013

14. A Fourth Paradigm in Science?
A New Era in Health?
Tuesday, October 29, 2013

15. A Fourth Paradigm in Science?
A New Era in Health?
Tuesday, October 29, 2013

16. President’s Council of Advisors on
Science and Technology (PCAST)
Tuesday, October 29, 2013

17. President’s Council of Advisors on
Science and Technology (PCAST)
Role of Health I. T.
•
•
•
Engage patients in their own care
•
•
•
Tuesday, October 29, 2013
Improve quality of care for individual
patient
Improve population-based knowledge
Create infrastructure for clinical
studies
Develop new tools for medicine
Increase administrative efficiency

18. President’s Council of Advisors on
Science and Technology (PCAST)
Designing a Digital Future
•
•
NITRD crucial for achieving national /
global priorities -- chief among these is
Health
•
Advances in NITRD needed to accelerate
discovery in other sciences
•
Tuesday, October 29, 2013
Networking and Information Technology
R & D (NITRD) essential for economic
competitiveness
NSF and DHHS should work together to
fund a new science of Human Computer
Interaction with respect to NITRD

19. Connected People: The National Health Information Infrastructure*
* see Hesse BW. Harnessing the power of an intelligent health environment in cancer control. Stud Health Technol Inform.
2005;118:159-176.
Tuesday, October 29, 2013

20. Connected People: Personal, Provider, Population
Tuesday, October 29, 2013

21. Connected People: Personal, Provider, Population
How do we promote
personal engagement?
Source: Hesse BW. Enhancing Consumer Involvement in Health Care. In: Parker JC, Thornson E, eds. Health Communication in the
New Media Landscape. New York, NY: Springer Publishing Company; 2008:119-149.
Tuesday, October 29, 2013

22. Connected People: Personal, Provider, Population
Health Information National
Trends Survey (HINTS)
http://hints.cancer.gov/
Source: Hesse, B. W. (2010). Health Communication in a World Gone Flat: Programmatic Overview of HINTS. In L. J. Finney
Rutten, B. W. Hesse, R. P. Moser & G. L. Kreps (Eds.), Building the Evidence Base in Cancer Communication. Cresskill, NJ: Hampton
Press.
Tuesday, October 29, 2013

23. Connected People: Personal, Provider, Population
Tuesday, October 29, 2013

24. Connected People: Personal, Provider, Population
Tuesday, October 29, 2013

25. Connected People: Personal, Provider, Population
2003*
*51.6% looked for self
*45.7% looked for others
See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information
National Trends Survey. Washington DC: National Cancer Institute. 2007.
Tuesday, October 29, 2013

26. Connected People: Personal, Provider, Population
2003*
2005*
*51.6% looked for self
*45.7% looked for others
*58.4% looked for self
*59.4% looked for
See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information
National Trends Survey. Washington DC: National Cancer Institute. 2007.
Tuesday, October 29, 2013

27. Connected People: Personal, Provider, Population
Preferred Source:
Imagine you had a strong need to get information about cancer.
Where would you go first?
See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information
National Trends Survey. Washington DC: National Cancer Institute. 2007.
Tuesday, October 29, 2013

28. Connected People: Personal, Provider, Population
Actual Source:
The most recent time you wanted information on cancer, where did
you go first?
See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information
National Trends Survey. Washington DC: National Cancer Institute. 2007.
Tuesday, October 29, 2013

29. Connected People: Personal, Provider, Population
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.
Tuesday, October 29, 2013

30. Connected People: Personal, Provider, Population
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.
Tuesday, October 29, 2013

31. Connected People: Personal, Provider, Population
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.
Tuesday, October 29, 2013

32. Connected People: Personal, Provider, Population
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.
Tuesday, October 29, 2013

33. Connected People: Personal, Provider, Population
2008*
Online Support
Bloggers
Social Networking
80%
% Internet Users
70%
60%
50%
40%
30%
20%
10%
0%
18-24
25-34
35-44
45-54
55-64
65+
Age
Source: Chou WY, Hunt YM, Beckjord EB, Moser RP, Hesse BW. Social media use in the United States: implications for health
communication. J Med Internet Res. 2009;11(4):e48.
Tuesday, October 29, 2013

34. Connected People: Personal, Provider, Population
2008*
Online Support
Bloggers
Social Networking
80%
% Internet Users
70%
60%
50%
40%
30%
20%
10%
0%
18-24
25-34
35-44
45-54
55-64
65+
Age
Source: Chou WY, Hunt YM, Beckjord EB, Moser RP, Hesse BW. Social media use in the United States: implications for health
communication. J Med Internet Res. 2009;11(4):e48.
Tuesday, October 29, 2013

35. Connected People: Personal, Provider, Population
Health Information National
Trends Survey (HINTS)
http://hints.cancer.gov/
Source: Hesse, B. W. (2010). Health Communication in a World Gone Flat: Programmatic Overview of HINTS. In L. J. Finney
Rutten, B. W. Hesse, R. P. Moser & G. L. Kreps (Eds.), Building the Evidence Base in Cancer Communication. Cresskill, NJ: Hampton
Press.
Tuesday, October 29, 2013

36. Connected People: Personal, Provider, Population
Health Information National
Trends Survey (HINTS)
http://hints.cancer.gov/
Source: Hesse, B. W. (2010). Health Communication in a World Gone Flat: Programmatic Overview of HINTS. In L. J. Finney
Rutten, B. W. Hesse, R. P. Moser & G. L. Kreps (Eds.), Building the Evidence Base in Cancer Communication. Cresskill, NJ: Hampton
Press.
Tuesday, October 29, 2013

37. Connected People: Personal, Provider, Population
Self-Determination Theory
Autonomy
Mastery
Connectedness
Source: Hesse BW. Enhancing Consumer Involvement in Health Care. In: Parker JC, Thornson E, eds. Health Communication in the
New Media Landscape. New York, NY: Springer Publishing Company; 2008:119-149.
Tuesday, October 29, 2013

38. Connected People: Personal, Provider, Population
Self-Determination Theory
Autonomy
Mastery
Connectedness
Wired Magazine;
“The Nike Experiment: How the Shoe Giant
Unleashed the Power of Personal Metrics”
Source: Hesse BW. Enhancing Consumer Involvement in Health Care. In: Parker JC, Thornson E, eds. Health Communication in the
New Media Landscape. New York, NY: Springer Publishing Company; 2008:119-149.
Tuesday, October 29, 2013

39. Connected People: Personal, Provider, Population
Self-Determination Theory
Autonomy
Mastery
Connectedness
Caring Bridge Creates
Communities of Support
Source: Hesse BW. Enhancing Consumer Involvement in Health Care. In: Parker JC, Thornson E, eds. Health Communication in the
New Media Landscape. New York, NY: Springer Publishing Company; 2008:119-149.
Tuesday, October 29, 2013

40. Connected People: Personal, Provider, Population
Tuesday, October 29, 2013

41. Connected People: Personal, Provider, Population
Tuesday, October 29, 2013

42. Connected People: Personal, Provider, Population
Tuesday, October 29, 2013

43. Connected People: Personal, Provider, Population
Benefits
• “Many
eyes”
on
record
to
improve
quality
• Memory
cue
for
pa+ent
aQer
exam
• Personal
right
of
pa+ent
Tensions
• Is
some
informa+on
“Toxic?”
• Will
doctors
be
unnecessarily
restricted
in
what
they
write?
Clinical Trial currently underway in Boston, MA
Tuesday, October 29, 2013

44. Connected People: Personal, Provider, Population
Benefits
• “Many
eyes”
on
record
to
improve
quality
• Memory
cue
for
pa+ent
aQer
exam
• Personal
right
of
pa+ent
Tensions
• Is
some
informa+on
“Toxic?”
• Will
doctors
be
unnecessarily
restricted
in
what
they
write?
Health Record as “Wiki”
Tuesday, October 29, 2013

45. Connected People: Personal, Provider, Population
Source: www.HealthIT.gov
Tuesday, October 29, 2013

46. Connected People: Personal, Provider, Population
Comprehensive Health
Enhancement Support
System (CHESS)
Clinician Report
Tuesday, October 29, 2013

47. Connected People: Personal, Provider, Population
* Hesse BW. Public Health Informatics. In: Gibbons MC, editor. eHealth Solutions for Healthcare
Disparities. New York, NY: Springer; 2007. p. 109-129.
Tuesday, October 29, 2013

48. Connected People: Personal, Provider, Population
Intel: “Aging in Place”
ARRA Grant: U MD
* Hesse BW, Suls JM. Informatics-enabled behavioral medicine in oncology. Cancer J. Jul-Aug 2011;17
(4):222-230.
Tuesday, October 29, 2013

49. Connected People: Personal, Provider, Population
Intel: “Aging in Place”
ARRA Grant: U MD
* Hesse BW, Suls JM. Informatics-enabled behavioral medicine in oncology. Cancer J. Jul-Aug 2011;17
(4):222-230.
Tuesday, October 29, 2013

50. Connected People: Personal, Provider, Population
Access to Personal Data
a Civil Right?
Tuesday, October 29, 2013

51. Connected People: Personal, Provider, Population
Access to Personal Data
a Civil Right?
Tuesday, October 29, 2013

52. Connected People: Personal, Provider, Population
Access to Personal Data
a Civil Right?
Tuesday, October 29, 2013

53. Connected People: Personal, Provider, Population
Access to Personal Data
a Civil Right?
Tuesday, October 29, 2013

54. Connected People: Personal, Provider, Population
Tuesday, October 29, 2013

55. Connected People: Personal, Provider, Population
Behavioral Data
Data “Mash Ups”
Mortality Data
Source: Rutten LF, Hesse BW, Moser RP, Kreps GL, eds. Building the Evidence Base in Cancer Communication. Cresskill,
NJ: Hampton Press; 2010. Kreps GL, ed. Health Communication.
Tuesday, October 29, 2013

56. Connected People: Personal, Provider, Population
Behavioral Data
Data “Mash Ups”
Mortality Data
Source: Rutten LF, Hesse BW, Moser RP, Kreps GL, eds. Building the Evidence Base in Cancer Communication. Cresskill,
NJ: Hampton Press; 2010. Kreps GL, ed. Health Communication.
Tuesday, October 29, 2013

57. Connected People: Personal, Provider, Population
Behavioral Data
Data “Mash Ups”
Mortality Data
Source: Rutten LF, Hesse BW, Moser RP, Kreps GL, eds. Building the Evidence Base in Cancer Communication. Cresskill,
NJ: Hampton Press; 2010. Kreps GL, ed. Health Communication.
Tuesday, October 29, 2013

58. Connected People: Personal, Provider, Population
Source: Forman MR, Greene SM, Avis NE, et al. Bioinformatics: Tools to accelerate population science and disease
control research. Am J Prev Med. Jun 2010;38(6):646-651.
Tuesday, October 29, 2013

59. Connected People: Personal, Provider, Population
Opening Data to Innovators
Tuesday, October 29, 2013

60. Connected People: Personal, Provider, Population
Opening Data to Innovators
Tuesday, October 29, 2013

61. Connected People: Personal, Provider, Population
Tuesday, October 29, 2013

62. Smart and Connected Health
Source: Hesse, B. W., Hansen, D., Finholt, T., Munson, S., Kellogg, W., & Thomas, J. C. (2010). Social Participation in Health
2.0. IEEE Computer, 43(11), 45-52.
Tuesday, October 29, 2013

63. Thank you!
Tuesday, October 29, 2013