Byu smart & connected 2012

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Invited talk to the schools of information science and public health, Brigham Young University December 2012. The ideas presented in the presentation laid the foundation for the subsequent "Smart and Connected Health" NIH-NSF funding initiative.

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SMART AND CONNECTED HEALTH

Nov 29, 2012

Bradford W. Hesse, PhDChief, Health Communication and Informatics Research Branch

Tuesday, October 29, 2013

President’s Cancer Panel Report (2007-2008)

Work together across National Cancer Program

How do we stand up to cancer? Who will make this happen?

Tuesday, October 29, 2013

The National Cancer ProgramTuesday, October 29, 2013

Question:

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

Program?”

Tuesday, October 29, 2013

Betty White, Saturday Night LiveMay 8, 2010

Tuesday, October 29, 2013

Founded: February 4, 2004

Registered Users: 955,000,000

Distribution: World wide

Reach: 45 % global Internet*

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

Founded: January 15, 2001

Registered Users: 35,000,000

Available in: 285 languages

Reach: 14 % global Internet*

Tuesday, October 29, 2013

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

TIME Endorses Participative Media as the Accomplishment of year (2005)

Tuesday, October 29, 2013

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

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

• 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

Using the Power of Massive Parallelism:“Citizen Science”

Tuesday, October 29, 2013

Traditional Model

• Hypothesis

• Studies

• Data aggregation

• Analysis

• Writing

• Submission

• Acceptance (NEJM)

• Publication

Time Elapsed: 6 years

Tuesday, October 29, 2013

Genetics Initiative

• Tool construction

• Recruitment

• Analysis

• Presentation

Time Elapsed: 8 months

Tuesday, October 29, 2013

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

Tuesday, October 29, 2013

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

Tuesday, October 29, 2013

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

Tuesday, October 29, 2013

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

Role of Health I. T.

• Improve quality of care for individual patient

• Engage patients in their own care

• Create infrastructure for clinical studies

• Improve population-based knowledge

• Develop new tools for medicine

• Increase administrative efficiency

Tuesday, October 29, 2013

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

Designing a Digital Future

• Networking and Information Technology R & D (NITRD) essential for economic competitiveness

• NITRD crucial for achieving national / global priorities -- chief among these is Health

• Advances in NITRD needed to accelerate discovery in other sciences

• NSF and DHHS should work together to fund a new science of Human Computer Interaction with respect to NITRD

Tuesday, October 29, 2013

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

Connected People: Personal, Provider, Population

Tuesday, October 29, 2013

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.

Connected People: Personal, Provider, Population

How do we promote personal engagement?

Tuesday, October 29, 2013

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

Connected People: Personal, Provider, Population

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

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*

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

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

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information National Trends Survey. Washington DC: National Cancer Institute. 2007.

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

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information National Trends Survey. Washington DC: National Cancer Institute. 2007.

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

Tuesday, October 29, 2013

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

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

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

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

Connected People: Personal, Provider, Population

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.

0%

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50%

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18-24 25-34 35-44 45-54 55-64 65+

Age

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Use

rs

Online Support Bloggers Social Networking2008*

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

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.

0%

10%

20%

30%

40%

50%

60%

70%

80%

18-24 25-34 35-44 45-54 55-64 65+

Age

% I

nte

rnet

Use

rs

Online Support Bloggers Social Networking2008*

Tuesday, October 29, 2013

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.

Connected People: Personal, Provider, Population

Tuesday, October 29, 2013

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

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.

Connected People: Personal, Provider, Population

Self-Determination TheoryAutonomyMasteryConnectedness

Tuesday, October 29, 2013

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.

Connected People: Personal, Provider, Population

Self-Determination TheoryAutonomyMasteryConnectedness

Wired Magazine;“The Nike Experiment: How the Shoe Giant

Unleashed the Power of Personal Metrics”

Tuesday, October 29, 2013

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.

Connected People: Personal, Provider, Population

Self-Determination TheoryAutonomyMasteryConnectedness

Caring Bridge Creates Communities of Support

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

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+entTensions• Is  some  informa+on  “Toxic?”• Will  doctors  be  unnecessarily  restricted  in  what  they  write?

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Health Record as “Wiki”

Benefits• “Many  eyes”  on  record  to  improve  quality

• Memory  cue  for  pa+ent  aQer  exam

• Personal  right  of  pa+entTensions• Is  some  informa+on  “Toxic?”• Will  doctors  be  unnecessarily  restricted  in  what  they  write?

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Source: www.HealthIT.govTuesday, October 29, 2013

Connected People: Personal, Provider, Population

Comprehensive Health Enhancement Support

System (CHESS)

Clinician Report

Tuesday, October 29, 2013

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

Connected People: Personal, Provider, Population

* Hesse BW, Suls JM. Informatics-enabled behavioral medicine in oncology. Cancer J. Jul-Aug 2011;17(4):222-230.

Intel: “Aging in Place” ARRA Grant: U MD

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

* Hesse BW, Suls JM. Informatics-enabled behavioral medicine in oncology. Cancer J. Jul-Aug 2011;17(4):222-230.

Intel: “Aging in Place” ARRA Grant: U MD

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Access to Personal Data a Civil Right?

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Access to Personal Data a Civil Right?

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Access to Personal Data a Civil Right?

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Access to Personal Data a Civil Right?

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Data “Mash Ups”

Behavioral Data

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

Connected People: Personal, Provider, Population

Data “Mash Ups”

Behavioral Data

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

Connected People: Personal, Provider, Population

Data “Mash Ups”

Behavioral Data

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

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

Connected People: Personal, Provider, Population

Opening Data to Innovators

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Opening Data to Innovators

Tuesday, October 29, 2013

Connected People: Personal, Provider, Population

Tuesday, October 29, 2013

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

Thank you!

Tuesday, October 29, 2013

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