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
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
February 2, 2012DIYgenomics.org
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
February 2, 2012DIYgenomics.org
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
February 2, 2012DIYgenomics.org
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
DIYbio (Do-It-Yourself
Biology)
Quantified Self-Tracking
Citizen Science
February 2, 2012DIYgenomics.org
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
February 2, 2012DIYgenomics.org
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
February 2, 2012DIYgenomics.org
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
February 2, 2012DIYgenomics.org
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
February 2, 2012DIYgenomics.org
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
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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
February 2, 2012DIYgenomics.org
Citizen Science
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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
February 2, 2012DIYgenomics.org
Japanese Citizen Science Project
Source: http://www.npr.org/blogs/health/2011/03/24/134823329/citizen-scientists-crowdsource-radiation-measurements-in-japan
February 2, 2012DIYgenomics.org
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
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Image credits: http://www.biocurious.orgImage credit: http://diybionyc.blogspot.com
February 2, 2012DIYgenomics.org
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.
February 2, 2012DIYgenomics.org
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
February 2, 2012DIYgenomics.org
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
Health Social Networks
(global & local)
February 2, 2012DIYgenomics.org
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 #
February 2, 2012DIYgenomics.org
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.
February 2, 2012DIYgenomics.org
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.
February 2, 2012DIYgenomics.org
Genomera‘eBay of health studies’
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300+ Community Members20 Studies (10-65 enrollees)
Access: www.DIYgenomics.org
February 2, 2012DIYgenomics.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
February 2, 2012DIYgenomics.org
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
February 2, 2012DIYgenomics.org
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.
February 2, 2012DIYgenomics.org
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
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
February 2, 2012DIYgenomics.org
Top 10 Participatory Healthcare ( 参加型ヘルスケアー ) Initiatives
Personal Health
RecordsMicrobiomics
Whole Human Genome
Sequencing
Health Social Networks
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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