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 ,[object Object],[object Object],[object Object],[object Object],[object Object],February 2, 2012 DIYgenomics.org 2 Source: http://melanieswan.com/publications.htm ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],良い午後

Participative Healthcare ( 参加型ヘルスケアー ) ,[object Object],[object Object],[object Object],[object Object],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 ,[object Object],[object Object],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) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],February 2, 2012 DIYgenomics.org 8 Image credit: http://mymedsphr.com

Personalized Genomics ,[object Object],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 ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],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 ,[object Object],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? ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],February 2, 2012 DIYgenomics.org 13 Image credits: http://www.biocurious.org Image credit: http://diybionyc.blogspot.com

Quantified Self ,[object Object],[object Object],[object Object],[object Object],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 ,[object Object],[object Object],[object Object]

Health Social Networks ,[object Object],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 ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],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 ,[object Object],[object Object],[object Object],[object Object],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 ,[object Object],[object Object],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 ,[object Object],[object Object],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 ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

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

Swan icice 2 feb 2012

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Swan icice 2 feb 2012