swan icice 2 feb 2012

Advancing the Tohoku Region: An Emerging System of Support for Human Life & Health in

Japan’s Post-Disaster Region

( 参加型ヘルスケア )

Participative HealthcareMelanie Swan

FounderDIYgenomics

+1-650-681-9482@DIYgenomics

www.DIYgenomics.org [email protected]

February 2, 2012Japan National Diet Members’ Office Building of the House of Representatives ( 衆議院議員会館 ), TokyoSlides: http://slideshare.net/LaBlogga

http://www.DIYgenomics.org/

February 2, 2012DIYgenomics.org

About Melanie Swan• Founder DIYgenomics, participatory healthcare

movement leader• Current projects: MelanieSwan.com• Education: MBA Finance, Wharton; BA

French/Economics, Georgetown Univ • Work experience: Fidelity, JP Morgan, iPass,

RHK/Ovum, Arthur Andersen• Sample publications:

2Source: http://melanieswan.com/publications.htm

• Swan M. Meeting Report: American Aging Association 40(th) Annual Meeting, Raleigh, North Carolina, June 3-6, 2011. Rejuvenation Res. 2011, Aug;14(4):449-55.

• Swan, M., Hathaway, K., Hogg, C., McCauley, R., Vollrath, A. Citizen science genomics as a model for crowdsourced preventive medicine research. J Participat Med. 2010, Dec 23; 2:e20.

• Swan, M. Multigenic Condition Risk Assessment in Direct-to-Consumer Genomic Services. Genet. Med. 2010, May;12(5):279-88.

• Swan, M. Translational antiaging research. Rejuvenation Res. 2010, Feb;13(1):115-7.• Swan, M. Engineering Life into Technology: the Application of Complexity Theory to a Potential

Phase Transition of Intelligence. Symmetry 2010, 2, 150:183. • Swan, M. Emerging patient-driven health care models: an examination of health social networks,

consumer personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009, 2, 492-525.

良い午後


Participative Healthcare ( 参加型ヘルスケアー )

• Health 2.0, Medicine 2.0, eHealth, participative health (2008)

• “Use of a specific set of Web [2.0] tools (blogs, Podcasts, tagging, search, wikis, [health social networks], etc.) by actors in health care including doctors, patients, and scientists, using principles of…in order to personalize health care, collaborate, and promote health education” 1

• Society for Participatory Medicine (2010)• “Participatory Medicine is a movement in which networked

patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners”2

31Source: http://en.wikipedia.org/wiki/Medicine_2.0#cite_note-jmir.org-32Source: http://e-patients.net/archives/2010/04/a-patient-centric-definition-of-participatory-medicine.html


DIYbio (Do-It-Yourself

Biology)

Concepts in Participatory Healthcare( 参加型ヘルスケアー )

4

Quantified Self-

Tracking

Citizen Science

http://ezramagazine.cornell.edu

http://www.iab.keio.ac.jp

http://thecoolgadgets.com

http://ezramagazine.cornell.edu/

http://www.iab.keio.ac.jp/

http://thecoolgadgets.com/


Participatory Healthcare ( 参加型ヘルスケアー ) Activity Landscape

5

(Light) Level of Engagement (Intense)

Social Media

Mobile Healthcare

Apps

PHRs Personal Health

Records)

Consumer Genomics

Image credit: Getty Images


Biology)

Quantified Self-Tracking

Citizen Science


Health 2.0 Social Media

• Web 2.0 in the health context• Blogs, twitter, facebook, mixi,

wikis, search, google+, video

6

Image credit: http://www.siliconangle.com


Smartphone as Medical Support for Participative Healthcare ( 参加型ヘルスケアー )

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Image credit: http://www.3gdoctor.com

Image credit: http://www.mobihealthnews.com

Image credit: tehgaygeek.blogspot.com


PHRs (Personal Health Records)

• Patient-administered medical records • Traditional: blood type, family history,

Rx data• Health 2.0: genome profiles, self-

tracking data

• Improved health outcomes• PHR users 68% better at following up

on recommended care• Empowers health self-management,

more active role

8Image credit: http://mymedsphr.com


Personalized Genomics

• Using genetic sequencing profiles of individuals in health and wellness decisions

Image credit: http://123RF.com

Example: rs1801133 AG AA, AG, GG

Allele, variant, SNP (single nucleotide polymorphism); “typo” in red; normal in green

Example: rs7412 CT CC, CT, TT


Numerous Useful Applications of Genomics

1. Established• Ancestry• Carrier status• Identity (paternity, forensics)

2. Maturing• Health condition risk1

• Pharmaceutical response2

3. Novel• Athletic performance capability• Product response• Environmental toxins and radioactivity exposure processing

4. Farther future• Predictive wellness profiling: aging, cancer, immune response

10

Image credit: http://bit.ly/fovpJc

1Source: Swan M. Multigenic condition risk assessment in direct-to-consumer genomic services. Genet Med. 2010 May;12(5):279-88.2Source: http://www.fda.gov/Drugs/ScienceResearch/ResearchAreas/Pharmacogenetics/ucm083378.htm


Citizen Science

11

InstitutionalScience

ResearchCitizen Science in Health & Biology

Citizen Science200+

Organizations1

1http://scienceforcitizens.net/finder

• Performing scientific investigation without professional training in the field

Image credit: http://www.csmonitor.com


Japanese Citizen Science Project

Source: http://www.npr.org/blogs/health/2011/03/24/134823329/citizen-scientists-crowdsource-radiation-measurements-in-japan


Participative Healthcare ( 参加型ヘルスケアー ) Why Now?

• Tools• Plummeting cost of genome sequencing• Availability of consumer blood tests• Online bioinformatics tools

• Education and support• Local DIYbio labs, online forums

13

Image credits: http://www.biocurious.orgImage credit: http://diybionyc.blogspot.com


Quantified Self

• Goal: Personalized knowledge through quantified self-tracking

• Format: Monthly ‘show and tell’ meetups• Result: Optimality and improvement

• Example: Personalized interventions for depression, low energy, sleep quality

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Image credit: http://www.nationalpost.com Image credit: Quantified Self

Source: Swan, M. Overview of Crowdsourced Health Research Studies. 2012. Forthcoming.


Quantified Self Study Examples

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Images credit: Lauren Manning

Image credit: Quantified Self

1Source: http://flowingdata.com/2011/06/29/a-year-of-food-consumption-visualized2Source: http://quantifiedself.com/2011/01/results-of-the-buttermind-experiment

Data visualization: one year of food consumption1

Butter Mind study2

Improved arithmetic speed for 45 randomized individuals eating 2 ounces (56.7 grams) of butter per day


Health Social Networks

• Online health interest communities

16Source: Extended from Swan, M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009, 2, 492-525.

Health Collaboration Communities


(global & local)


Crowdsourced Health Studies

• Definition:• Research studies that

derive participants and data from a large group of people through an open call

• Researcher-organized• PatientsLikeMe

• 23andMe

• Participant-organized• Quantified Self

• Genomera

• DIYgenomics

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2. Homocysteine levels

DIYgenomics MTHFR Vitamin B Deficiency Study1

1. Genotype profiles

Baseline LMF BaselineCentrum

umol/l

C + LMF

1Source: Swan, M., Hathaway, K., Hogg, C., McCauley, R., Vollrath, A. Citizen science genomics as a model for crowdsourced preventive medicine research. J Participat Med. 2010 Dec 23; 2:e20. Results are not statistically significant and are intended as a pilot demonstration

Blood Test #


DIYgenomics

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• Goal: Preventive Medicine • Realize preventive medicine by establishing baseline markers of

wellness and pre-clinical interventions

• Generalized Hypothesis• One or more polymorphisms may result in out-of-bounds baseline

levels of phenotypic markers. These levels may be improved through personalized intervention.

Genotype Phenotype Intervention Result+ + =

Source: Swan, M., Hathaway, K., Hogg, C., McCauley, R., Vollrath, A. Citizen science genomics as a model for crowdsourced preventive medicine research. J Participat Med. 2010, Dec 23; 2:e20.


DIYgenomics Participative Healthcare ( 参加型ヘルスケアー ) Studies

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• Six studies in open enrollment (vitamin deficiency, aging, and mental performance)

• Five in design (oncology, calcinosis)

Source: Swan, M. Overview of Crowdsourced Health Research Studies. 2012. Forthcoming.


Genomera‘eBay of health studies’

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300+ Community Members20 Studies (10-65 enrollees)

Access: www.DIYgenomics.org

http://www.DIYgenomics.org/


Ontological Shift

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Old Thinking: My health is the responsibility of my physician

New thinking: My health is my responsibility… and I have the tools to make managing it easy

Image credit: Natasha Vita-More, Primo Posthuman


The Expanded Meaning of Health

22Source: Extended from Swan, M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009, 2, 492-525, Figure 1.

A New Model of Health & Healthcare


Role of Participative Healthcare ( 参加型ヘルスケアー ) for Future Medicine

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Citizen

Peer Collaboration & Health Advisors•Health social networks, crowdsourced studies, health advisors, wellness coaches, preventive care plans, boutique physicians, genetics coaches, aestheticians, medical tourism

Public Health & Welfare System•Deep expertise of traditional health system for disease and trauma treatment

Continuous Health Information Climate •Automated digital health monitoring, self-tracking devices, and mobile apps providing personalized recommendations

Source: Extended from Swan, M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009, 2, 492-525.



Biology)

Concepts in Participatory Healthcare( 参加型ヘルスケアー )

4

Quantified Self-

Tracking

Citizen Science

http://ezramagazine.cornell.edu

http://www.iab.keio.ac.jp

http://thecoolgadgets.com

http://ezramagazine.cornell.edu/

http://www.iab.keio.ac.jp/

http://thecoolgadgets.com/

Creative Commons 3.0 license

ありがとう

Melanie SwanFounder

DIYgenomics+1-650-681-9482

@[email protected]: http://slideshare.net/LaBlogga

Collaborators:

Lorenzo Albanello

Janet Chang

Cindy Chen

John Furber

Hong Guo

Kristina Hathaway

Laura Klemme

Priya Kshirsagar

Lucymarie Mantese

Raymond McCauley

Participative HealthcarePersonal Genome Apps

Marat Nepomnyashy

Ted Odet

Roland Parnaso

Thomas Pickard

William Reinhardt

Greg Smith

Aaron Vollrath

Lawrence S. Wong

International Collaborations:

JST and RIKEN Genesis

Takashi KIDO

Minae KAWASHIMA

Jin YAMANAKA

University Hospitals of Geneva

Louis Nahum

Armin Schnider

mailto:[email protected]


Top 10 Participatory Healthcare ( 参加型ヘルスケアー ) Initiatives

Personal Health

RecordsMicrobiomics

Whole Human Genome

Sequencing


Personalized Genomics

Crowdsourced Health Studies Blood Tests 2.0

Automated Self-Tracking Devices

Health Advisor

Social Media

2020+2010 2015

Image credit: http://www.dreamstime.com

Smartphone Health Apps

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