Byu smart & connected 2012

SMART AND CONNECTED
HEALTH

Bradford W. Hesse, PhD
Chief, Health Communication and
Informatics Research Branch
Tuesday, October 29, 2013

Nov 29, 2012

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

The National Cancer Program

Question:
Is there a mechanism for
collective action? How can we
connect the “National Cancer
Program?”


Betty White, Saturday Night Live
May 8, 2010


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

* Total Global Internet Users (December 31, 2011): 2,267,233,742

Founded: September 4, 1998
Revenue: $37.905 billion
Distribution: World wide

Founded: February 14, 2005
Entries: 48 hours / minute
8 years / per day
Available in: 54 languages


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”

Characteris*cs
of
new

Web
• Pla$orms
for

Par+cipa+on
• Harnessing
“Collec+ve

Intelligence”
• Data
as
the
new
“Intel

Inside”
APPLIED TO HEALTH?

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


Traditional Model

• Hypothesis
• Studies
• Data aggregation
• Analysis
• Writing
• Submission
• Acceptance (NEJM)
• Publication
Time Elapsed: 6 years


Genetics Initiative

• Tool construction
• Recruitment
• Analysis
• Presentation

Time Elapsed: 8 months


A Fourth Paradigm in Science?
A New Era in Health?


President’s Council of Advisors on
Science and Technology (PCAST)


Role of Health I. T.
•
•
•

Engage patients in their own care

•
•
•

Improve quality of care for individual
patient

Improve population-based knowledge

Create infrastructure for clinical
studies
Develop new tools for medicine
Increase administrative efﬁciency

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

•

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

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.

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.

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.


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.


2003*

2005*
*45.7% looked for others

*59.4% looked for



Preferred Source:
Imagine you had a strong need to get information about cancer.
Where would you go first?



Actual Source:
The most recent time you wanted information on cancer, where did
you go first?



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.


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.


Self-Determination Theory
Autonomy
Mastery
Connectedness



Autonomy
Mastery
Connectedness

Wired Magazine;
“The Nike Experiment: How the Shoe Giant
Unleashed the Power of Personal Metrics”



Autonomy
Mastery
Connectedness

Caring Bridge Creates
Communities of Support


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



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”



Source: www.HealthIT.gov


Comprehensive Health
Enhancement Support
System (CHESS)
Clinician Report


* Hesse BW. Public Health Informatics. In: Gibbons MC, editor. eHealth Solutions for Healthcare
Disparities. New York, NY: Springer; 2007. p. 109-129.

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.


Access to Personal Data
a Civil Right?


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.


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.


Opening Data to Innovators


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.

Thank you!


Byu smart & connected 2012

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