Swan icice 2 feb 2012

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Swan icice 2 feb 2012

  1. 1. 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
  2. 2. About Melanie Swan <ul><li>Founder DIYgenomics, participatory healthcare movement leader </li></ul><ul><li>Current projects: MelanieSwan.com </li></ul><ul><li>Education: MBA Finance, Wharton; BA French/Economics, Georgetown Univ </li></ul><ul><li>Work experience: Fidelity, JP Morgan, iPass, RHK/Ovum, Arthur Andersen </li></ul><ul><li>Sample publications: </li></ul>February 2, 2012 DIYgenomics.org 2 Source: http://melanieswan.com/publications.htm <ul><li>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. </li></ul><ul><li>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. </li></ul><ul><li>Swan, M. Multigenic Condition Risk Assessment in Direct-to-Consumer Genomic Services. Genet. Med. 2010, May;12(5):279-88. </li></ul><ul><li>Swan, M. Translational antiaging research. Rejuvenation Res. 2010, Feb;13(1):115-7. </li></ul><ul><li>Swan, M. Engineering Life into Technology: the Application of Complexity Theory to a Potential Phase Transition of Intelligence. Symmetry 2010, 2, 150:183. </li></ul><ul><li>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. </li></ul>良い午後
  3. 3. Participative Healthcare ( 参加型ヘルスケアー ) <ul><li>Health 2.0, Medicine 2.0, eHealth, participative health (2008) </li></ul><ul><ul><li>“ 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 </li></ul></ul><ul><li>Society for Participatory Medicine (2010) </li></ul><ul><ul><li>“ 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 </li></ul></ul>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
  4. 4. 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
  5. 5. 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
  6. 6. Health 2.0 Social Media <ul><li>Web 2.0 in the health context </li></ul><ul><li>Blogs, twitter, facebook, mixi, wikis, search, google+, video </li></ul>February 2, 2012 DIYgenomics.org 6 Image credit: http://www.siliconangle.com
  7. 7. 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
  8. 8. PHRs (Personal Health Records) <ul><li>Patient-administered medical records </li></ul><ul><ul><ul><li>Traditional: blood type, family history, Rx data </li></ul></ul></ul><ul><ul><ul><li>Health 2.0: genome profiles, self-tracking data </li></ul></ul></ul><ul><li>Improved health outcomes </li></ul><ul><ul><li>PHR users 68% better at following up on recommended care </li></ul></ul><ul><ul><li>Empowers health self-management, more active role </li></ul></ul>February 2, 2012 DIYgenomics.org 8 Image credit: http://mymedsphr.com
  9. 9. Personalized Genomics <ul><li>Using genetic sequencing profiles of individuals in health and wellness decisions </li></ul>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
  10. 10. Numerous Useful Applications of Genomics <ul><li>Established </li></ul><ul><ul><li>Ancestry </li></ul></ul><ul><ul><li>Carrier status </li></ul></ul><ul><ul><li>Identity (paternity, forensics) </li></ul></ul><ul><li>Maturing </li></ul><ul><ul><li>Health condition risk 1 </li></ul></ul><ul><ul><li>Pharmaceutical response 2 </li></ul></ul><ul><li>Novel </li></ul><ul><ul><li>Athletic performance capability </li></ul></ul><ul><ul><li>Product response </li></ul></ul><ul><ul><li>Environmental toxins and radioactivity exposure processing </li></ul></ul><ul><li>Farther future </li></ul><ul><ul><li>Predictive wellness profiling: aging, cancer, immune response </li></ul></ul>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
  11. 11. Citizen Science February 2, 2012 DIYgenomics.org 11 1 http://scienceforcitizens.net/finder <ul><li>Performing scientific investigation without professional training in the field </li></ul>Image credit: http://www.csmonitor.com Institutional Science Research Citizen Science in Health & Biology Citizen Science 200+ Organizations 1
  12. 12. 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
  13. 13. Participative Healthcare ( 参加型ヘルスケアー ) Why Now? <ul><li>Tools </li></ul><ul><ul><li>Plummeting cost of genome sequencing </li></ul></ul><ul><ul><li>Availability of consumer blood tests </li></ul></ul><ul><ul><li>Online bioinformatics tools </li></ul></ul><ul><li>Education and support </li></ul><ul><ul><li>Local DIYbio labs, online forums </li></ul></ul>February 2, 2012 DIYgenomics.org 13 Image credits: http://www.biocurious.org Image credit: http://diybionyc.blogspot.com
  14. 14. Quantified Self <ul><li>Goal: Personalized knowledge through quantified self-tracking </li></ul><ul><li>Format: Monthly ‘show and tell’ meetups </li></ul><ul><li>Result: Optimality and improvement </li></ul><ul><ul><li>Example: Personalized interventions for depression, low energy, sleep quality </li></ul></ul>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.
  15. 15. 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 <ul><li>Data visualization: one year of food consumption 1 </li></ul><ul><li>Butter Mind study 2 </li></ul><ul><ul><li>Improved arithmetic speed for 45 randomized individuals eating 2 ounces (56.7 grams) of butter per day </li></ul></ul>
  16. 16. Health Social Networks <ul><li>Online health interest communities </li></ul>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)
  17. 17. Crowdsourced Health Studies <ul><li>Definition: </li></ul><ul><ul><li>Research studies that derive participants and data from a large group of people through an open call </li></ul></ul><ul><li>Researcher-organized </li></ul><ul><ul><li>PatientsLikeMe </li></ul></ul><ul><ul><li>23andMe </li></ul></ul><ul><li>Participant-organized </li></ul><ul><ul><li>Quantified Self </li></ul></ul><ul><ul><li>Genomera </li></ul></ul><ul><ul><li>DIYgenomics </li></ul></ul>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 #
  18. 18. DIYgenomics February 2, 2012 DIYgenomics.org 18 <ul><li>Goal: Preventive Medicine </li></ul><ul><li>Realize preventive medicine by establishing baseline markers of wellness and pre-clinical interventions </li></ul><ul><li>Generalized Hypothesis </li></ul><ul><li>One or more polymorphisms may result in out-of-bounds baseline levels of phenotypic markers. These levels may be improved through personalized intervention. </li></ul>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 + + =
  19. 19. DIYgenomics Participative Healthcare ( 参加型ヘルスケアー ) Studies February 2, 2012 DIYgenomics.org 19 <ul><li>Six studies in open enrollment (vitamin deficiency, aging, and mental performance) </li></ul><ul><li>Five in design (oncology, calcinosis) </li></ul>Source: Swan, M. Overview of Crowdsourced Health Research Studies. 2012. Forthcoming.
  20. 20. Genomera ‘eBay of health studies’ February 2, 2012 DIYgenomics.org 20 300+ Community Members 20 Studies (10-65 enrollees) Access: www.DIYgenomics.org
  21. 21. Ontological Shift <ul><li>Old Thinking: My health is the responsibility of my physician </li></ul><ul><li>New thinking: My health is my responsibility … and I have the tools to make managing it easy </li></ul>February 2, 2012 DIYgenomics.org 21 Image credit: Natasha Vita-More, Primo Posthuman
  22. 22. 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
  23. 23. 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 <ul><li>Peer Collaboration & Health Advisors </li></ul><ul><li>Health social networks, crowdsourced studies, health advisors, wellness coaches, preventive care plans, boutique physicians, genetics coaches, aestheticians, medical tourism </li></ul><ul><li>Public Health & Welfare System </li></ul><ul><li>Deep expertise of traditional health system for disease and trauma treatment </li></ul><ul><li>Continuous Health Information Climate </li></ul><ul><li>Automated digital health monitoring, self-tracking devices, and mobile apps providing personalized recommendations </li></ul>
  24. 24. 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
  25. 25. 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
  26. 26. 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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