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 Healthcare Melanie Swan Founder DIYgenomics +1-650-681-9482 @DIYgenomics www.DIYgenomics.org [email_address] February 2, 2012 Japan National Diet Members’ Office Building of the House of Representatives ( 衆議院議員会館 ), Tokyo Slides: http://slideshare.net/LaBlogga

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:
February 2, 2012 DIYgenomics.org 2 Source: 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
February 2, 2012 DIYgenomics.org 3 1 Source: http://en.wikipedia.org/wiki/Medicine_2.0#cite_note-jmir.org-3 2 Source: http://e-patients.net/archives/2010/04/a-patient-centric-definition-of-participatory-medicine.html

Concepts in Participatory Healthcare ( 参加型ヘルスケアー ) February 2, 2012 DIYgenomics.org 4 http://ezramagazine.cornell.edu http://www.iab.keio.ac.jp http://thecoolgadgets.com DIYbio (Do-It-Yourself Biology) Quantified Self-Tracking Citizen Science

Participatory Healthcare ( 参加型ヘルスケアー ) Activity Landscape February 2, 2012 DIYgenomics.org 5 Image credit: Getty Images (Light) Level of Engagement (Intense) Social Media Mobile Healthcare Apps PHRs Personal Health Records) Consumer Genomics DIYbio (Do-It-Yourself 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
February 2, 2012 DIYgenomics.org 6 Image credit: http://www.siliconangle.com

Smartphone as Medical Support for Participative Healthcare ( 参加型ヘルスケアー ) February 2, 2012 DIYgenomics.org 7 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
February 2, 2012 DIYgenomics.org 8 Image credit: http://mymedsphr.com

Personalized Genomics
Using genetic sequencing profiles of individuals in health and wellness decisions
February 2, 2012 DIYgenomics.org Image credit: http://123RF.com Example: rs1801133 A G AA , A G , GG Allele, variant, SNP (single nucleotide polymorphism); “typo” in red; normal in green Example: rs7412 C T CC , C T , TT

Numerous Useful Applications of Genomics
Established
Ancestry
Carrier status
Identity (paternity, forensics)
Maturing
Health condition risk 1
Pharmaceutical response 2
Novel
Athletic performance capability
Product response
Environmental toxins and radioactivity exposure processing
Farther future
Predictive wellness profiling: aging, cancer, immune response
February 2, 2012 DIYgenomics.org 10 Image credit: http://bit.ly/fovpJc 1 Source: Swan M. Multigenic condition risk assessment in direct-to-consumer genomic services. Genet Med. 2010 May;12(5):279-88. 2 Source: http://www.fda.gov/Drugs/ScienceResearch/ResearchAreas/Pharmacogenetics/ucm083378.htm

Citizen Science February 2, 2012 DIYgenomics.org 11 1 http://scienceforcitizens.net/finder
Performing scientific investigation without professional training in the field
Image credit: http://www.csmonitor.com Institutional Science Research Citizen Science in Health & Biology Citizen Science 200+ Organizations 1

Japanese Citizen Science Project February 2, 2012 DIYgenomics.org 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
February 2, 2012 DIYgenomics.org 13 Image credits: http://www.biocurious.org Image 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
February 2, 2012 DIYgenomics.org 14 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 February 2, 2012 DIYgenomics.org 15 Images credit: Lauren Manning Image credit: Quantified Self 1 Source: http://flowingdata.com/2011/06/29/a-year-of-food-consumption-visualized 2 Source: http://quantifiedself.com/2011/01/results-of-the-buttermind-experiment
Data visualization: one year of food consumption 1
Butter Mind study 2
Improved arithmetic speed for 45 randomized individuals eating 2 ounces (56.7 grams) of butter per day

Health Social Networks
Online health interest communities
February 2, 2012 DIYgenomics.org 16 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. Health Collaboration Communities Health Social Networks (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
February 2, 2012 DIYgenomics.org 17 2. Homocysteine levels DIYgenomics MTHFR Vitamin B Deficiency Study 1 1. Genotype profiles Baseline LMF Baseline Centrum umol/l C + LMF 1 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. Results are not statistically significant and are intended as a pilot demonstration Blood Test #

DIYgenomics February 2, 2012 DIYgenomics.org 18
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.
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. Genotype Phenotype Intervention Result + + =

DIYgenomics Participative Healthcare ( 参加型ヘルスケアー ) Studies February 2, 2012 DIYgenomics.org 19
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’ February 2, 2012 DIYgenomics.org 20 300+ Community Members 20 Studies (10-65 enrollees) Access: www.DIYgenomics.org

Ontological Shift
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
February 2, 2012 DIYgenomics.org 21 Image credit: Natasha Vita-More, Primo Posthuman

The Expanded Meaning of Health February 2, 2012 DIYgenomics.org 22 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, Figure 1. A New Model of Health & Healthcare

Role of Participative Healthcare ( 参加型ヘルスケアー ) for Future Medicine February 2, 2012 DIYgenomics.org 23 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. 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

Concepts in Participatory Healthcare ( 参加型ヘルスケアー ) February 2, 2012 DIYgenomics.org 4 http://ezramagazine.cornell.edu http://www.iab.keio.ac.jp http://thecoolgadgets.com DIYbio (Do-It-Yourself Biology) Quantified Self-Tracking Citizen Science

ありがとう Creative Commons 3.0 license Melanie Swan Founder DIYgenomics +1-650-681-9482 @DIYgenomics www.DIYgenomics.org [email_address] Slides: 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 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 Participative Healthcare Personal Genome Apps

Top 10 Participatory Healthcare ( 参加型ヘルスケアー ) Initiatives February 2, 2012 DIYgenomics.org Personal Health Records Microbiomics 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 26

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