Participant driven-health

Future of Health: Overview of Participant-driven Research and Medicine Melanie Swan Founder DIYgenomics +1-650-681-9482 @DIYgenomics www.DIYgenomics.org [email_address] 37th health seminar "Patient-driven research and medicine" November 10, 2011, Lausanne Switzerland Slides: http://slideshare.net/LaBlogga

About Melanie Swan ,[object Object],[object Object],[object Object],[object Object],[object Object],Source: http://melanieswan.com/publications.htm ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Top 10 list of participative health initiatives 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

Agenda ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: Natasha Vita-More, Primo Posthuman

Information transmission eras Painting, scrolls Press, Transistor DNA Analog Digital Life code ? ? 2000-2100 1455&1950-2000 17,300 years ago 2100+

Biology is an information technology DNA sequencing: 10x/yr improvement Image credit: http://pubs.acs.org/cen/_img/87/i50/8750cover2_law.gif I hate you 010010010010000001101 0 000110 000 1011101000110010100100000011110010110111101110101 I love you 01001001001000000110110001101111011101100110010100100000011110010110111101110101

Biology is the information technology Image credit: J. Craig Venter Institute Image credit: Anthony Atala lab Image credit: Thomas Matthiesen Artificial cell booted to life Algal biofuel Image credit: http://www.rexresearch.com Whole organ decellularization and recellularization (heart) Organ regeneration (urethra) DNA nanotechnology latch box for drug delivery Image credit: Aarhus University

Rising worldwide health care costs Source: http://www.kff.org/insurance/snapshot/OECD042111.cfm

Woeful state of global public health systems ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://www.boomertownsquare.com 1 Source: http://www.innovationnewsdaily.com/medical-innovation-pharmaceutical-drugs-2090

Citizen science definition Institutional science research Citizen science health and biology Citizen science: 200+ organizations 1 1 http://scienceforcitizens.net/finder ,[object Object],Image credit: http://www.southernfriedscience.com

Citizen science health – why now? ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credits: http://www.biocurious.org Image credit: http://diybionyc.blogspot.com

Participative health definition ,[object Object],[object Object],[object Object],[object Object],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

Participative health activities Image credit: Getty Images (Light) Level of Engagement (Heavy) Social media Mobile health apps PHRs (personal health records) Consumer genomics Health social networks and crowd-sourced health studies

[object Object],[object Object],Health 2.0 social media Image credit: http://www.siliconangle.com

Social media increases health literacy ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://ramialsindi.wordpress.com 1 Source: http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx 2 Source: http://www.mmm-online.com/europe-edges-us-in-social-media-for-health-info-says-study/article/166461/ 3 Source: http://www.worldofhealthit.org/sessionhandouts/documents/PS34-1-DeniseSilber.pdf

Social media health tech: Physician consultation and review Image credit: http://www.americanwell.com Image credit: http://www.3gdoctor.com Image credit: http://www.webicina.com

Smartphone as personal doctor ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],1 Kang C. Number of cell phones exceeds US population. Washington Post. October 11, 2011. 2 Dufau S. Smart phone, smart science: how the use of smartphones can revolutionize research in cognitive science. PLoS One. 2011. 3 Kiser K. 25 ways to use your smartphone. Physicians share their favorite uses and apps. Minn Med. 2011. 4 Boulos MN. How smartphones are changing the face of mobile and participatory healthcare. Biomed Eng Online. 2011. Image credit: http://www.psfk.com

Smartphone health apps ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://www.mobihealthnews.com 1 Dufau S. Smart phone, smart science: how the use of smartphones can revolutionize research in cognitive science. PLoS One. 2011. Image credit: tehgaygeek.blogspot.com

PHRs (personal health records) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://mymedsphr.com

Health social networks ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://glennamoe.com

Health social networks and collaboration 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)

Global perspective: culture matters ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],1 French National Reference Center for Health Care and Autonomy Image credit: http://www.worldofstock.com

Personalized genomics definition ,[object Object],[object Object],[object Object],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],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

Direct-to-consumer genomics: 23andMe Source: http://www.23andme.com; open source genomes http://www.snpedia.com/index.php/Genomes 1,000,000 SNPs scanned and mapped to 214 conditions

23andMe colorectal cancer marker Source: http://www.23andme.com

Pathway Genomics drug response Source: http://www.pathway.com

Consumer genomics comparison scorecard ,[object Object],*Physician prescription required 1 Conditions, genes, variants, underlying research references, and methodology white paper(s) available on public website Consumer genomic service # Cond-itions Cost Report Data access Visible research quality 1 Updates deCODEme 49 $2,000  +   +  23andme 214 $99     + Navigenics* 40 $999   Pathway Genomics* 71 $299  Coriell (10,000 partic. 7/11) 15 public study PGP (Personal Genome Project) n/a public study

Open-source mobile apps (5,000+ downloads) ,[object Object],[object Object],[object Object],[object Object],Android development: Michael Kolb, Lawrence S. Wong, Laura Klemme, Melanie Swan iOS development: Ted Odet, Greg Smith, Laura Klemme, Melanie Swan “ genomics” 4,000+ downloads “ genomics” 1,000+ downloads T T T T T T T C C

[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],DIY genotyping kits: Cofactor Bio 1 Source: http://cofactorbio.com/education

Example: what to do with your data ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],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, Molecular and Developmental Neuroscience. May 8, 2007.

Finding your BDNF data, variant rs6265 ,[object Object]

Athletic performance Source: http://www.genome.duke.edu/education/seminars/journal-club/documents/Assael_2009.pdf

Athletic performance Image credit: http://www.istockphoto.com V = number of variants; % = ratio of favorable polymorphisms to total alleles for a sample individual; S = number of studies Source: Swan, M. Applied genomics: personalized interpretation of athletic performance GWAS. 2011 . Submitted. Category Genes V % S Endurance, power, and energy Endurance ACE, ACTN3, ADRB2/ ADRB3, BDKRB2, COL5A1, GNB3 7 50 22 Power ACE, ACTN3, AGT 3 50 8 Energy HIF1A, PPARGC1A 3 25 9 Musculature, and heart and lung capacity Muscle fatigue and repair HNF4A, NAT2 and IL-1B 5 40 4 Strength HFE, HIF1A, IGF1, MSTN GDF8 5 17 15 Heart and lung capacity CREB1, KIF5B, NOS3, NPY and ADRB1, APOE, NRF1 9 36 11 Metabolism, recovery, and other Metabolism AMPD1, APOA1, PPARA, PPARD 5 50 9 Recovery CKMM/CKM, IL6 2 50 5 Ligament and tendon strength Ligament strength COL1A1, COL5A1, CILP 3 50 4 Tendon strength COL1A1, COL5A1, GDF5, MMP3 7 63 5

Lung cancer risk and drug response ,[object Object],Source: Swan, M. Review of cancer risk prediction in direct-to-consumer genomic services. (poster) Canary Foundation Early Detection Symposium, May 25-27, 2010, Stanford University, Stanford CA. Image credit: http://www.xianet.net

Predictive wellness profiling: cancer ,[object Object],Image credit: http://utmb.edu TP53: cell cycle arrest, PTEN: cell cycle progression modulator, MYC: cell cycle regulator Source: DIYgenomics

Wellness profiling: immune system ,[object Object],[object Object],[object Object],Image credit: http://www.iayork.com CTLA4: T-cell inhibition; IL3: growth-promoting cytokine Source: DIYgenomics

Product and environment genomic profiling ,[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],Source: DIYgenomics 1 P&G, Kaczvinsky JR et al, Skin Therapy Lett, 2011 Image credit: http://sciencephoto.com

Microbiomics ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: Grice EA et al, Nat Rev Microbiol, 2011, Figure 3 Skin microbiome ecosystem distribution

GI microbiome project: my.microbes.eu ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credits: my.microbes.eu Enterotype affiliation analysis 1 Source: Arumugam M et al. Enterotypes of the human gut microbiome. Nature. 2011 May 12;473(7346):174-80. Science for everyone

Genome politics and regulation ,[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://www.sonypictures.com Image credit: http://sciencephoto.com

Direct-to-consumer genomics trade-offs Drawbacks Advantages ,[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],[object Object],[object Object],[object Object],[object Object],[object Object]

Crowdsourced health studies ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],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 intended as a pilot demonstration Blood Test #

PatientsLikeMe studies ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted.

PatientsLikeMe: drug-related studies ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted. Image credit: http://wdfyfe.wordpress.com

PatientsLikeMe: user experience ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted.

23andMe genome association studies ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted.

Quantified self ,[object Object],[object Object],[object Object],[object Object],Image credit: http://www.nationalpost.com Image credit: Quantified Self Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted.

Quantified self study examples ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],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 3 Source: Roberts S. The unreasonable effectiveness of my self-experimentation. Med Hypotheses. 2010 Dec;75(6):482-9.

Genomera ‘eBay of health studies’ Nov 2011: 300+ community members, 20 studies with 10-65 enrollees Site access through www.DIYgenomics.org

DIYgenomics ,[object Object],[object Object],[object Object],[object Object],[object Object],Genotype Phenotype Intervention Outcome + + =

DIYgenomics participant-organized studies ,[object Object],Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted.

DIYgenomics memory study Image credit: http://bit.ly/g2DIcW Source: http://genomera.com/studies/aging-telomere-length-and-telomerase-activation-therapy ,[object Object],[object Object],[object Object],[object Object]

DIYgenomics Retin-A skin cream study ,[object Object],Source: http://genomera.com/studies/retin-a-wonder-cream-for-acne-and-wrinkles-is-there-a-genomic-link

DIYgenomics TA-65 aging study ,[object Object],[object Object],Source: http://genomera.com/studies/aging-telomere-length-and-telomerase-activation-therapy

Next-generation participative health ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://www.digitalculture-ed.net

Engaging personal health collaborators ,[object Object],[object Object],[object Object],[object Object],Image credit: http://www.liberatemedia.com (Light) Participative Health Activities by Level of Engagement (Heavy) Social media Mobile health apps PHRs (personal health records) Consumer genomics Health social networks and crowd-sourced health studies

Three participative health user groups ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Professionalizing participative health: innovating the research model Institutional PI (principal investigator) Traditional Research Model Patient-organized Research Model Research subjects Citizen scientists Investigators = Participants Institutional Review Board (IRB) IRBs, FAQs, Citizen ethicists Grant funding Journal publication Self publishing Patient advocacy groups Research foundations Social VC Crowd-sourcing

Professionalizing participative health: the CRO 1 2.0 ecosystem 1 CRO – contract research organization (outsourced operator of clinical trials and health studies) Source: Swan, M. Professionalizing citizen science health studies: the emergence of a new form of contract research organization. 2011. Submitted.

Professionalizing participative health: Philosophical validation ,[object Object],[object Object],[object Object],[object Object],Image credit: http://inkingrey.com

Ontological shift ,[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://efx3.com

What else is needed? Blood Tests 2.0 ,[object Object],[object Object],[object Object],[object Object],[object Object],OrSense continuous non-invasive glucose monitoring Cholestech LDX home cholesterol test ZRT Labs dried blood spot tests Source: http://futurememes.blogspot.com/2011/10/blood-tests-20-advances-with-dried.html

Open-source health collaboration tools ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Slides: http://slideshare.net/LaBlogga

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

Role of participative health: future medicine Individual 2. Peer collaboration and health advisors Health social networks, crowdsourced studies, health advisors, wellness coaches, preventive care plans, boutique physicians, genetics coaches, aestheticians, medical tourism 3. Public health system Deep expertise of traditional health system for disease and trauma treatment 1. 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.

Health self-management 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. ,[object Object]

But wait… Image credit: http://www.sldesigns.com Drawbacks of participative health ,[object Object],[object Object],[object Object],[object Object],[object Object]

Participative health summary ,[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://sciencephoto.com Social media Mobile health apps PHRs (personal health records) Consumer genomics Health social networks and crowd-sourced health studies

Merci! Melanie Swan Founder DIYgenomics +1-650-681-9482 @DIYgenomics www.DIYgenomics.org [email_address] Slides: http://slideshare.net/LaBlogga Creative Commons 3.0 license 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 Rikengenesis Takashi Kido Minae Kawashima Jin Yamanaka University Hospitals of Geneva Louis Nahum Armin Schnider Personal genome apps Crowd-sourced clinical trials

Stem cell therapies: status of the field ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Image credit: http://stemcellresources.org Source: Swan, M. Steady Advance of Stem Cell Therapies. Rejuvenation Research. 2011. Forthcoming.

Stem cell therapies: contemporary science ,[object Object],[object Object],[object Object],Source: Swan, M. Steady Advance of Stem Cell Therapies. Rejuvenation Research. 2011. Forthcoming. Image credit: stemcellumbilicalcordblood.com

Nanomedicine ,[object Object],[object Object],[object Object],[object Object],[object Object],Respirocytes Microbivore Artery cleaner Nanoparticles Vasculocyte Clottocytes DNA walker Structural DNA: Holliday junction Quantum dot dyes Farther future Now Source: Swan, M. Top ten recent nanomedical advances. Book chapter in Clinical Nanomedicine: from Bench to Bedside 2011, Forthcoming.

Era of 3 rd and 4 th -gen genome sequencing 3 rd Gen: Sequencing by Synthesis 2 nd Gen: Parallelized sequencing 1 st Gen: Sanger Sequencing 4 th Gen: Electronic Sequencing Sources: http://www.genomicseducation.ca/files/images/information_articles/sequencing.gif, http://www.wellcome.ac.uk/News/2009/Features/WTX056032.htm, http://www.pacificbiosciences.com/video_lg.html, http://www.nanoporetech.com/sequences

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