Health Futures: Participatory Medicine and Crowdsourced Research Studies

Health Futures: Participatory Medicine and Crowdsourced Research Studies Melanie Swan Founder DIYgenomicsMedia X 2012 Seminar +1-650-681-9482 @DIYgenomicsMay 16, 2012, Stanford CA www.DIYgenomics.orgSlides: http://slideshare.net/LaBlogga m@melanieswan.com

About Melanie Swan Founder: DIYgenomics Current projects: MelanieSwan.com Education: MBA Finance, Wharton; BA French/Economics, Georgetown University Work experience: Fidelity, JP Morgan, iPass, RHK/Ovum, Arthur Andersen Singularity University Instructor, IEET Affiliate Scholar, sample publications:  Swan, M. Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. J Med Internet Res 2012, Mar;14(2):e46.  Swan, M. Scaling crowdsourced health studies: the emergence of a new form of contract research organization. Personalized Medicine 2012, Mar;9(2):223-234.  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. 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.May 16, 2012 Source: http://melanieswan.com/publications.htm 2DIYgenomics.org

Participatory health summary The right public health solution at the right time Image credit: http://sciencephoto.com Biology is the transistor of the 21st century Proliferation of involvement in participatory medicine  Light engagement: social media  Heavy engagement: crowdsourced health research studies Participatory health is integral to realizing the personalized, preventive medicine of the futureMay 16, 2012 3DIYgenomics.org

Top 10 list of participatory health initiatives Automated self- tracking devices Image credit: Personal Microbiomicshttp://www.dreamstime.com health records Social media Crowdsourced health studies Blood tests 2.0 Smartphone health apps Health advisor Health social Whole human Personalized genome networks genomics sequencing 2010 2015 2020+May 16, 2012 4DIYgenomics.org

Agenda Introduction: context for participatory health Participatory health initiatives  Social media, smartphone health apps, PHRs  Personalized genomics  Crowdsourced studies Health 2050: next-generation participatory health and preventive medicine Image credit: Natasha Vita-More, Primo PosthumanMay 16, 2012 5DIYgenomics.org

Information transmission eras Analog Digital Life code ?17,300 years ago 1455&1950-2000 2000-2100 2100+Painting, scrolls Press, Transistor DNA ? May 16, 2012 6 DIYgenomics.org

Information processing erasEnumeration Biomimicry Big data ? 1950s 1990s+ 2000s+ 2100+Expert syst, CYC NLP, HTM, NCC Google, Watson ? May 16, 2012 7 DIYgenomics.org

Big data: personal health informatics DNA: SNP mutations RNA expression profiling Health 2.0: Proteomics DNA: Structural Personal health variation informatics Epigenetics Microbiomics MetabolomicsMay 16, 2012 Academic papers re: integrated health data streams: Auffray C, et al. Looking back at genomic medicine in 2011. Genome Med. 2012 Jan 30;4(1):9. Chen R et al. Personal omics profiling reveals dynamic molecular and medical phenotypes. Cell. 2012 Mar 16;148(6):1293-307. 8DIYgenomics.org

Big data: collective intelligence computing Crowdsourcing Concierge research Consumer genomics Citizen science Health 2.0: Consumer blood tests Crowdsourced health computing DIYbio labs Continuous Ambient mental sampling performance Quantified self- optimization trackingMay 16, 2012 “Individuals are computing nodes processing health information” 9DIYgenomics.org

Rising worldwide health care costsMay 16, 2012 Source: http://www.kff.org/insurance/snapshot/OECD042111.cfm 10DIYgenomics.org

Woeful state of global public health systems Rising health care costs Populations: aging and less-healthy CDC: US 34% obese today, 42% by 20301 Image credit: http://www.boomertownsquare.com Anticipated physician shortages Cost per new drug: $1.5 billion New drug applications: 23 in 2011 vs. 45 in 1996 Upcoming period of care rationing?May 16, 2012 1 Source: http://today.msnbc.msn.com/id/47337275/ 11DIYgenomics.org

Participatory health definition Health 2.0, Medicine 2.0, eHealth, participatory 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”2May 16, 2012 1 Source: http://en.wikipedia.org/wiki/Medicine_2.0#cite_note-jmir.org-3 Source: http://e-patients.net/archives/2010/04/a-patient-centric-definition-of-participatory-medicine.html 13DIYgenomics.org 2

Participatory health activities (Light) Level of Engagement (Heavy) Social Mobile PHRs Consumer Health social networks media health apps (personal genomics and crowdsourced health health studies records) Image credit: Getty ImagesMay 16, 2012 14DIYgenomics.org

Health 2.0 social media Web 2.0 in the health context Blogs, twitter, facebook, wikis, search, google+, video Image credit: http://www.xojane.comMay 16, 2012 15DIYgenomics.org

Social media increases responsibility-taking 27% of US internet users track health data online1 41% of European physicians believe social media will play an increasingly important role in shaping patient management and treatment2 Image credit: http://www.americanwell.com Image credit: http://www.3gdoctor.comMay 16, 2012 1 Source: http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx 2 Source: http://www.worldofhealthit.org/sessionhandouts/documents/PS34-1-DeniseSilber.pdf 16DIYgenomics.org

Smartphone as personal doctor Mobile is the platform Image credit: http://www.psfk.com  US: more cell phones (328 m) than people (315 m) 1 Worldwide smartphone users  One billion+ by 20132  81% physicians using smartphones 20123 Explosive growth in application (app) downloads  5 billion in 2010 versus 300 million in 20094 Health-related apps: 7,0004 Image credit: tehgaygeek.blogspot.com  Studies: thousands recruited in months2 Intimate continuous interaction platform  Phone loss noticed within 5 minutes vs. 1 hour for wallet loss  Kids chat with Siri as virtual friend 1 Kang C. Number of cell phones exceeds US population. Washington Post. October 11, 2011.May 16, 2012 2 Dufau S. Smart phone, smart science: how the use of smartphones can revolutionize research in cognitive science. PLoS One. 2011. 3Kiser K. 25 ways to use your smartphone. Physicians share their favorite uses and apps. Minn Med. 2011. 17DIYgenomics.org 4 Boulos MN. How smartphones are changing the face of mobile and participatory healthcare. Biomed Eng Online. 2011.

PHRs (personal health records) Patient-administered medical records Image credit: http://mymedsphr.com PHR use is growing (Deloitte)  11% PHR use in 2011, +3% from 2008  Aetna 1.5 million users (Sep 2011) Image credit: http://www.mobihealthnews.com Improved health outcomes  PHR users 68% better at following up on recommended care  Empowers health self-management, more active roleMay 16, 2012 18DIYgenomics.org

Health social networks and collaboration Health social Health networks collaboration (global & local) communities Source: Extended from Swan, M. Emerging patient-driven health care models: an examination of health social networks, consumerMay 16, 2012 personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009, 2, 492-525. 19DIYgenomics.org

Personalized genomics definition Using genetic sequencing profiles of individuals in health and wellness decisions Consumer cost = $99  International availability, 100,000+ subscribers Allele, variant, SNP (single nucleotide polymorphism); “typo” in red; normal in green Example: rs1801133 AG AA, AG, GG Example: rs7412 CT CC, CT, TT Image credit: http://123RF.comMay 16, 2012DIYgenomics.org

Numerous useful applications of genomics1. Established  Ancestry  Carrier status  Identity (paternity, forensics)2. Maturing  Health condition risk1  Pharmaceutical response23. Novel  Athletic performance capability  OTC product response  Environment/toxin processing Image credit: http://bit.ly/fovpJc4. Farther future  Predictive wellness profiling: aging, cancer, immune responseMay 16, 2012 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 22DIYgenomics.org

Direct-to-consumer genomics: 23andMe 1,000,000 SNPs scanned and mapped to 237 conditionsMay 16, 2012 Source: http://www.23andme.com; open source genomes http://www.snpedia.com/index.php/Genomes 23DIYgenomics.org

23andMe colorectal cancer markerMay 16, 2012 Source: http://www.23andme.com 24DIYgenomics.org

23andMe colorectal cancer markerMay 16, 2012 Source: http://www.23andme.com 25DIYgenomics.org

Pathway Genomics drug responseMay 16, 2012 Source: http://www.pathway.com 26DIYgenomics.org

Consumer genomics comparison scorecard  Which service to buy? Consumer # Cost Report Data Visible Updates genomic service Cond- access research itions quality1 49 $2,000 +  +  237 $99    + 40 $999*   71 $299*  15 public study n/a public study *Physician prescription required May 16, 2012 1 Conditions, genes, variants, underlying research references, and methodology white paper(s) available on public website DIYgenomics.org

Open-source mobile apps (5,000+ downloads) Health condition, drug response, athletic performance capability T T T Private 23andMe data upload T T T T C C Android “genomics”4,000+ downloads iPhone “genomics”1,000+ downloadsMay 16, 2012 Android development: Michael Kolb, Lawrence S. Wong, Laura Klemme, Melanie Swan iOS development: Ted Odet, Greg Smith, Laura Klemme, Melanie Swan 28DIYgenomics.org

Example: what to do with your data Check if you have the risk allele for the BDNF gene Determine related SNP/rsID#, rs6265 (neuroplasticity) Search genomic data for rs6265 genotype (e.g., CC) Determine the risk allele (which letter?) (e.g.; G1) Current genomics search resources  PharmGKB, dbSNP, GWAS catalog, SNPediaMay 16, 2012 Source: http://www.wired.com/wiredscience/2009/10/genetically-bad-driving 1 Ribeiro, L. et. Al., The brain-derived neurotrophic factor rs6265 (Val66Met) polymorphism and depression in Mexican-Americans. Cellular,DIYgenomics.org Molecular and Developmental Neuroscience. May 8, 2007. 29

Finding your BDNF data, variant rs6265 Consumer genomic services genotype 1 million variants but only map a few up to the annotation browserMay 16, 2012DIYgenomics.org 30

Athletic performanceMay 16, 2012 Source: http://www.genome.duke.edu/education/seminars/journal-club/documents/Assael_2009.pdf 31DIYgenomics.org

Personal microbiomics Skin microbiome ecosystem distribution My.microbes.eu gut enterotype analysis Image credits: my.microbes.eu  Disease risk, drug response, and nutrient generation  Enterotype affiliation and nutrients1 1. Bacteroides (biotin synthesis) 2. Prevotella (thiamine synthesis) Image credit: Grice EA et al, Nat Rev Microbiol, 2011, Figure 3 3. Ruminococcus (folate synthesis)May 16, 2012 1 Source: Arumugam M et al. Enterotypes of the human gut microbiome. Nature. 2011 May 12;473(7346):174-80. 32DIYgenomics.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 Image credit: http://www.noupe.comMay 16, 2012 Source: Swan, M. Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. J Med Internet Res 2012, Mar;14(2):e46. 34DIYgenomics.org

Researcher-organized crowdsourced studies PatientsLikeMe studies (~50 papers, 150,000 community members, 1000 conditions)  ALS (amyotrophic lateral sclerosis); patient-run lithium study  Pharmaceutical-related studies: off-label use, adherence quantification, patient sentiment  User experience in health social networks 23andMe genome association studies (~10 papers, >100,000 community members)  Technique: replication and novel discovery  Large-scale (3,426 cases/29,624 controls) Parkinson’s study; phenotype-genotype linkage (20,000 responses)  Non-disease condition (trait) associations (hair color, freckling, smell detection, and sneeze reflex)May 16, 2012 Source: Swan, M. Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. J Med Internet Res 2012, Mar;14(2):e46. 35DIYgenomics.org

Quantified self Goal: personalized knowledge through quantified self-tracking Format: monthly ‘show n tell’ meetups Outcome: optimality and improvement  Example: personalized interventions for depression, low energy, sleep quality Image credit: http://www.nationalpost.com Image credit: Quantified SelfMay 16, 2012 Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted. 36DIYgenomics.org

May 2012: 600+ community members,Genomera 25 studies with 10-65 enrollees Site access through‘eBay of health studies’ www.DIYgenomics.orgMay 16, 2012 37DIYgenomics.org

DIYgenomics 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 = OutcomeMay 16, 2012 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. 38DIYgenomics.org

DIYgenomics participant-organized studies 7 studies in open enrollment (vitamin deficiency, aging, and mental performance)May 16, 2012 Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted. 39DIYgenomics.org

Results from DIYgenomics Vitamin B pilot DIYgenomics MTHFR Vitamin B deficiency study1 1. Genotype profiles umol/l 2. Homocysteine levels Blood Test # Baseline Centrum LMF C + LMF Baseline 1 Source: Swan, M., Hathaway, K., Hogg, C., McCauley, R., Vollrath, A. Citizen science genomics as a model for crowdsourcedMay 16, 2012 preventive medicine research. J Participat Med. 2010 Dec 23; 2:e20. 40DIYgenomics.org Results are not statistically significant and intended as a pilot demonstration

New DIYgenomics studies Diabetes Social Intelligence Genomics and Quantified-Self Genomics and Caffeine Sleep Tracking Study Empathy Study Study Investigate diabetes Determine if there is a Investigate a potential prevention in healthy link between genetics genetic link with sleep individuals with and altruism, empathy, quality in healthy glucometer tracking, SNP and optimism, including individuals and caffeine review, hemoglobin, and with the use of a SIRI consumption, using the cholesterol blood tests 2.0 personal virtual myZEO tracker and coach intervention personalized interventionsMay 16, 2012 Source: DIYgenomics 41DIYgenomics.org

Agenda Introduction: context for participatory health Participatory health initiatives  Social media, smartphone health apps, PHRs  Personalized genomics  Crowdsourced studies Health 2050: next-generation participatory health and preventive medicine  Practical  Philosophical Image credit: Natasha Vita-More, Primo PosthumanMay 16, 2012 42DIYgenomics.org

Role of participatory health: future medicine 1. Continuous health information climate Automated digital health monitoring, self-tracking devices, and mobile apps providing personalized recommendations 2. Peer collaboration and health advisors Health social networks, crowdsourced studies, health advisors, wellness coaches, preventive care plans, Individual boutique physicians, genetics coaches, aestheticians, medical tourism 3. Public health system Deep expertise of traditional health system for disease and trauma treatmentMay 16, 2012 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. 43DIYgenomics.org

New health frontier: mental performance optimizationMood Management Apps from Mobilyze and M. Morris ‘Siri 2.0’ Personal Virtual Coach from PTSD App DIYgenomics Source: http://www.ptsd.va.gov/public/pages/ ptsdcoach.asp Sources: http://cbits.northwestern.edu and Source: DIYgenomics Social Intelligence Study http://quantifiedself.com/2009/03/a-few-weeks-ago-i http://diygenomics.pbworks.com/w/page/48946791/social_intelligence May 16, 2012 44 DIYgenomics.org

Professionalizing participatory health: innovating the research model Traditional Research Model Participatory Research Model CRO 2.0 (contract research organization Institutional IRBs, FAQs, Review Board Citizen ethicists (IRB) Patient Institutional PI advocacy Grant Journal Self (principal groups Citizen scientistsfunding publication publishing investigator) Research Investigators = foundations Participants Research Social VC subjects Crowd- sourcing May 16, 2012 Source: Swan, M. Scaling crowdsourced health studies: the emergence of a new form of contract research organization. Personalized Medicine 2012, Mar;9(2):223-234. 45 DIYgenomics.org

More consumer assays are needed  Low-cost home-administered self-read tests: § Blood/saliva/urine tests 2.0 (Cholesterol, Vitamins A-E, Folate, Creatinine, eGFR, Cortisol, Calcium, Iron; Hormones Estrogen, Progesterone, Testosterone, Estradiol; Immune system: CD4, CD8/CD28 ratio, IL-1, IL-6) § Daily microbiome profiling assay (skin, oral cavity, gut) § Consumer epigenetic test § Consumer RNA expression test Cholestech LDX OrSense continuous non-invasive ZRT Labs driedhome cholesterol test glucose monitoring blood spot tests May 16, 2012 Source: http://futurememes.blogspot.com/2011/10/blood-tests-20-advances-with-dried.html 46 DIYgenomics.org

Philosophically expanded concept of health A new model of health and health careMay 16, 2012 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. 47DIYgenomics.org

Ontological shift Image credit: http://efx3.com 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 easyMay 16, 2012 Source: Swan, M. Biotechnicity 2.0: Computation-enabled Philosophical Advance in the Epistemology of Human Biology and the Ontology of Bioidentity. May 2012. Conference presentation: Symposium on Computational Philosophy, AISB/IACAP World Congress 48DIYgenomics.org (in Honor of Alan Turing, 1912-1954), July 2-6, 2012, University of Birmingham, Birmingham, UK.

Professionalizing participatory health:Philosophical validation Towards an epistemology of citizen science  Provide a structure and context for participant-derived health knowledge Q1: Are new kinds of knowledge are being formed through group collaborations such as wikipedia and health social networks? Q2: How to characterize the knowledge generated by traditional medicine, self-experimentation, and health collaboration communities? Image credit: http://inkingrey.comMay 16, 2012 Source: Swan, M. Biotechnicity 2.0: Computation-enabled Philosophical Advance in the Epistemology of Human Biology and the Ontology of Bioidentity. May 2012. Conference presentation: Symposium on Computational Philosophy, AISB/IACAP World Congress 49DIYgenomics.org (in Honor of Alan Turing, 1912-1954), July 2-6, 2012, University of Birmingham, Birmingham, UK.

Top 10 list of participatory health initiatives Automated self- tracking devices Image credit: Personal Microbiomicshttp://www.dreamstime.com health records Social media Crowdsourced health studies Blood tests 2.0 Smartphone health apps Health advisor Health social Whole human Personalized genome networks genomics sequencing 2010 2015 2020+May 16, 2012 50DIYgenomics.org

Image credit: http://www.sldesigns.comBut wait… Potential drawbacks of participatory health • Health hobbyist niche, not mainstream • Perceptions of health: negative, deterministic • Anemic participation in health collaboration communities • Financial incentives required for self health monitoring • Unclear how to incorporate into public health systemsMay 16, 2012 51DIYgenomics.org

Participatory health summary The right public health solution at the right time Image credit: http://sciencephoto.com Biology is the transistor of the 21st century Proliferation of involvement in participatory medicine  Light engagement: social media  Heavy engagement: crowdsourced health research studies Participatory health is integral to realizing the personalized, preventive medicine of the futureMay 16, 2012 52DIYgenomics.org

Crowd-sourced clinical trials Personal genome apps Thank you! Collaborators: International collaborations: Lorenzo Albanello Marat Nepomnyashy Janet Chang Ted Odet JST and Rikengenesis Cindy Chen Roland Parnaso Takashi Kido John Furber Thomas Pickard Minae Kawashima Hong Guo William Reinhardt Jin Yamanaka Kristina Hathaway Greg Smith Laura Klemme Aaron Vollrath University Hospitals of Geneva Priya Kshirsagar Lawrence S. Wong Louis Nahum Lucymarie Mantese Armin Schnider Melanie Swan Founder Raymond McCauley DIYgenomics +1-650-681-9482 @DIYgenomics www.DIYgenomics.orgCreative Commons 3.0 license Slides: http://slideshare.net/LaBlogga m@melanieswan.com

Study design template: Vitamin B deficiency Cyanocobalamin Image credit: http://wikimedia.orgMay 16, 2012 Source: http://diygenomics.pbworks.com http://diygenomics.pbworks.com/w/file/36469280/DIYgenomics+study+design+template+blank.doc 54DIYgenomics.org

Image credit: http://bit.ly/g2DIcWDIYgenomics memory study Goal: 100 member cohort •Genotype: COMT, DRD2, SLC6A3 (~5 SNPs) (neurotransmitter modulation) •Phenotype: memory test (20-25 minutes) •Background questionnaireMay 16, 2012 Source: http://genomera.com/studies/aging-telomere-length-and-telomerase-activation-therapy 55DIYgenomics.org

DIYgenomics Retin-A skin cream study Genetic profiling can predict Retin-A side-effects?May 16, 2012 Source: http://genomera.com/studies/retin-a-wonder-cream-for-acne-and-wrinkles-is-there-a-genomic-link 56DIYgenomics.org

DIYgenomics TA-65 aging study Telomerase genes, telomere length, and intervention Telomere-lengthening and immune system benefits (Harley CB et al, Rejuvenation Res, 2011, de Jesus BB et al, Aging Cell, 2011)May 16, 2012 Source: http://genomera.com/studies/aging-telomere-length-and-telomerase-activation-therapy 57DIYgenomics.org

Quantified self study examples 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 and mental performance3  Reduced early awakening by avoiding breakfast and spending more time during Images credit: Lauren Manning the day standing  Improved mood by seeing faces  Lost weight by drinking sugar water Image credit: Quantified Self 1 Source: http://flowingdata.com/2011/06/29/a-year-of-food-consumption-visualizedMay 16, 2012 2 Source: http://quantifiedself.com/2011/01/results-of-the-buttermind-experiment 58DIYgenomics.org 3 Source: Roberts S. The unreasonable effectiveness of my self-experimentation. Med Hypotheses. 2010 Dec;75(6):482-9.

DIY genotyping kits: Cofactor Bio Markets:  Research: one-off genotyping  Classroom education How it works  Select SNPs of interest  Order kit ($20/kit (minimum 4))  Go through DNA collection, extraction, PCR amplification steps  Send results to lab for sequencing  Check online for resultsMay 16, 2012 1 Source: http://cofactorbio.com/education 59DIYgenomics.org

Biotechnicity and computational philosophy Metaphysical shift: new ways of being •Meaning: What do the new definitions of health mean? •Identity: Sense of self and group identity, biocitizenryImage credit: http://stemcellresources.org Epistemic advance: new knowledge generation •Content: New data streams, larger data sets, more granular data, higher order magnitude science •Process: New algorithms and new models Computational tools of health discovery •Hardware and software devices and algorithms: quantitative health data streams, health-related smartphone applications, personal electronic health records, quantified self- tracking devices •Crowdsourced human computing networks: crowdsourced disease prediction, health social networks, quantified self n=1 health self-experimentation, crowdsourced health research studies, DIYbio labs May 16, 2012 Source: Swan, M. Biotechnicity 2.0: Computation-enabled Philosophical Advance in the Epistemology of Human Biology and the Ontology of Bioidentity. 2012. Submitted. 60 DIYgenomics.org

Genotype + Phenotype + Intervention = OutcomeStandard study protocol – methodology Collect relevant genomic SNP data  Literature search for polymorphisms associated with condition Measure relevant phenotypes before and after (typical study duration = 1 month)  Quantitative measures: blood test, self-tracking device data  Qualitative measures: user surveys Intervention (n=100 to 1000)  Group A: nothing (control)  Group B: intervention 1 (experimental group 1)  Group C: intervention 2 (experimental group 2) Image credit: http://sciencemag.org Advisors: confirm protocol design with two independent academics or professionals in the fieldMay 16, 2012 Source: DIYgenomics 61DIYgenomics.org

Health Futures: Participatory Medicine and Crowdsourced Research Studies

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