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
Founder DIYgenomics, futurist and applied genomics expert
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:
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.

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
Introduction: context for participative health
Participant-driven health initiatives
Social media, smartphone health apps, PHRs
Personalized genomics
Crowdsourced studies
Next-generation participative health
Future medicine conclusion
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
Rising health care costs
Aging populations worldwide
Anticipated physician shortages
Cost per new drug: $1.5 billion
New drug apps: 23 in 2011 vs. 45 in 1996
Biotechnology investment reticence 1
Upcoming period of care rationing?
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
Performing scientific investigation without professional training in the field
Image credit: http://www.southernfriedscience.com

Citizen science health – why now?
Tools
Plummeting cost of genome sequencing
Availability of consumer blood tests
Online bioinformatics tools
Education and support
Local DIYbio labs, online forums
Image credits: http://www.biocurious.org Image credit: http://diybionyc.blogspot.com

Agenda

Participative health definition
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
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

Web 2.0 in the health context
Blogs, twitter, facebook, wikis, search, google+, video
Health 2.0 social media Image credit: http://www.siliconangle.com

Social media increases health literacy
Consumer response to social media
27% of US internet users track health data online, 18% seek others with similar health concerns 1
67% of Europeans trust social media information 2
European physician response to social media
30% physicians are members of social networks 2
2/3+ interested in joining social networks 2
41% believe social media will play an increasingly important role in shaping their patient management and treatment 3
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
Mobile is the platform
US: more cell phones (328 m) than people (315 m) 1
Smartphone users
One billion+ by 2013 2
81% physicians using smartphones 2012 3
Explosive growth in application (app) downloads
5 billion in 2010 versus 300 million in 2009 4
Health-related apps: 7,000 4
Intimate continuous interaction platform
Phone loss noticed within 5 minutes vs. 1 hour for wallet loss
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
Consumer uses
Education, information, and self-tracking
Physician uses
Access patient information, contact colleagues, information look-up (billing codes, drug formularies, reference material)
Health app focal areas
Nutrition, exercise, diabetes, obesity
Mental health and behavioral change
Scaled up research projects
Thousands recruited in months 1
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)
Patient-administered medical records
Traditional: blood type, family history, Rx data
Health 2.0: genome profiles, self-tracking data
Link with traditional medicine
Cost savings, real-time information access, error reduction, improved communication for individuals & health systems
PHR use is growing
11% PHR use in 2011, +3% from 2008 (Deloitte)
Aetna 1.5 million users (Sep 2011)
Improved health outcomes
PHR users 68% better at following up on recommended care
Empowers health self-management, more active role
Image credit: http://mymedsphr.com

Health social networks
Definition
Online health interest communities where members may…
… share demographic and condition-related information
… track treatments, symptoms, and outcomes
… find other similar patients for condition benchmarking
… join collaborative health studies
Physician-focused
Sermo (global), BlogFMC (France+), Good Doctor’s Forum (China), DoctorsNet (UK)
Consumer/patient-focused
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
US: early adopter
UK: public health initiatives
Europe
Regulation, DIY culture, informed, initiative-taking
France (early-adopter, self-responsibility taking) 1 , Germany (+environment, light footprint, institutional mistrust), Denmark (self-tinkering, self-informed), Italy/Spain (institutional context)
Middle East / South Korea / Singapore
Rapid early adopters, financial resources, less-democratic political regimes
Latin America / Asia / Africa (BRIC)
Straight to health 2.0/genomic medicine; regional leaders in key industries (e.g.; genomic sequencing and interpretation)
1 French National Reference Center for Health Care and Autonomy Image credit: http://www.worldofstock.com

Agenda

Personalized genomics definition
Using genetic sequencing profiles of individuals in health and wellness decisions
Consumer cost = $99
International availability, 100,000+ subscribers
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
OTC product response
Environment/toxin processing
Farther future
Predictive wellness profiling: aging, cancer, immune response
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
Which service to buy?
*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)
Health condition, drug response, athletic performance capability
Private 23andMe data upload
Android
iPhone
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

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 results
DIY genotyping kits: Cofactor Bio 1 Source: http://cofactorbio.com/education

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.; G 1 )
Current genomics search resources
PharmGKB, dbSNP, GWAS catalog, SNPedia
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
Consumer genomic services genotype 1 million variants but only map a few up to the annotation browser

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
Risk and drug response for specific cancers
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
Proto-oncogene/tumor suppressor gene polymorphisms
Image credit: http://utmb.edu TP53: cell cycle arrest, PTEN: cell cycle progression modulator, MYC: cell cycle regulator Source: DIYgenomics

Wellness profiling: immune system
Immune system genomic wellness profiling
Immune response: T-cell activation
CTLA4, CD226, CD86, IL3
Image credit: http://www.iayork.com CTLA4: T-cell inhibition; IL3: growth-promoting cytokine Source: DIYgenomics

Product and environment genomic profiling
OTC product response, efficacy, and side effects
Skin (anti-wrinkle, 1 antioxidant, anti-itching creams, personalized mosquito repellent)
Hair (hair loss treatments)
Esophagus (reflux, bile acid response treatments)
Teeth (periodontitis remedies)
Sleep (insomnia treatments)
Environmental exposure: toxin processing
Benzene
Quinone oxidoreductase
PAHs metabolism
Arylarene metabolism
Mercury and lead exposure
Liver and kidney health (general)
Source: DIYgenomics 1 P&G, Kaczvinsky JR et al, Skin Therapy Lett, 2011 Image credit: http://sciencephoto.com

Microbiomics
10x human cells (2 kg, +4°C), 150x genetic repertoire
15-20 body sites
Skin, eyes, mouth, nose, lungs, GI tract, genitals
Activities: ferment food, produce vitamins, prevent pathogen growth
Influences disease, drug response, nutrient pathways
Compositional and functional analysis
Image credit: Grice EA et al, Nat Rev Microbiol, 2011, Figure 3 Skin microbiome ecosystem distribution

GI microbiome project: my.microbes.eu
EMBL Heidelberg, 1451 €
Enterotype affiliation 1
Bacteroides (biotin synthesis)
Prevotella (thiamine synthesis)
Ruminococcus (folate synthesis)
Novel promicrobial and antimicrobial treatments
Stimulatory
Inhibitory
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
Our world is not Gattaca
Issues: human cloning, sex selection, genetic privacy, non-discrimination
UN Convention on Human Rights and Biomedicine 1997 (Ch IV Human Genome)
U.S. Genetic Information Nondiscrimination Act (GINA) 2008
Biocitizenry, health as a basic human right
Image credit: http://www.sonypictures.com Image credit: http://sciencephoto.com

Direct-to-consumer genomics trade-offs Drawbacks Advantages
Unregulated
Usefulness of information
Unclear correlation
Polygenic disease
Lack of therapies
Results interpretation
Genetic counseling
False positives, false negatives
Insurance and employment discrimination
Fact-based information
Improved consumer experience
Consumer-owned data
Self-empowerment
Low-cost availability
Impact on healthcare
Increased health literacy
Consumer more active, better outcomes
Destigmatization

Agenda

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
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
Patient-organized ALS lithium study
2008: 348 initial patients, 149 (2 mos), 78 (12 mos)
No effect found: patient self-experimentation, observational study (149 cases/447 controls) & traditional randomized studies
ALS (amyotrophic lateral sclerosis)
Handedness connection between limb physical activity and disease onset in arms but not legs
Additional items for condition sensitivity measurement scale (motor skills, emotion, mobility)
Low participation in ALS studies due to lack of invitation, enrollment cost concerns & confusion
Comparative research: pathological gambling tendencies (ALS 3%, Parkinson’s disease 13%)
Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted.

PatientsLikeMe: drug-related studies
Off-label use for amitriptyline (depression) and modafinil (wakefullness-promoting; narcolepsy and sleep apnea)
40% ALS amitriptyline users unwanted excess saliva reduced
36% MS and PD modafinil users reported decreased fatigue
Quantifying medication adherence
36% participation rate from MS community
16-51% (by treatment) missed one dose in the last 28 days
Patient sentiment per PLM forum discussion
Positive outlook for MS drug Tysabri (natalizumab) despite being linked to 3 cases of progressive multifocal leukoencephalopathy (PML) in 2008
Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted. Image credit: http://wdfyfe.wordpress.com

PatientsLikeMe: user experience
Health social network participation (19% response)
Positive reaction, comfort in sharing health data
Uses: learn about symptoms, understand treatments and side effects, make decisions about treatments
Peer benefits of condition benchmarking relative to others
Next steps for improving health social networks
Interpreting unstructured information, managing churning community populations, self-reported data challenges
Examine health social network participation and link to real-world outcomes
Identify and create new tools to further empower health self-management, for example to facilitate patient-organized studies

23andMe genome association studies
One of largest Parkinson’s disease (3,426 cases/29,624 controls) studies
Replication of 20 previous genetic associations
Discover of two new ones (rs6812193 and rs11868035)
20,000 responses on 50 medical phenotypes
180 previously reported associations for type 2 diabetes, prostate cancer, cholesterol levels, and multiple sclerosis; only 75% of expected associations
Non-disease condition (trait) associations
Replication: hair color, eye color, and freckling
Novel associations: morphology, freckling, smell detection, and sneeze reflex

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 Self Source: Swan, M. Review of Crowdsourced Health Research Studies. 2011. Submitted.

Quantified self study examples
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 and mental performance 3
Reduced early awakening by avoiding breakfast and spending more time during the day standing
Improved mood by seeing faces
Lost weight by drinking sugar water
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
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 Outcome + + =

DIYgenomics participant-organized studies
6 studies in open enrollment (vitamin deficiency, aging, and mental performance); 5 in design (oncology, calcinosis)

DIYgenomics memory study Image credit: http://bit.ly/g2DIcW Source: http://genomera.com/studies/aging-telomere-length-and-telomerase-activation-therapy
Goal: 100 member cohort
Genotype: COMT, DRD2, SLC6A3 (~5 SNPs) (neurotransmitter modulation)
Phenotype: memory test (20-25 minutes)
Background questionnaire

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

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)
Source: http://genomera.com/studies/aging-telomere-length-and-telomerase-activation-therapy

Agenda

Engaging collaborators
Know the market
Strategic marketing and recruitment
Professionalizing participative health
CRO 2.0: innovating the research model
Validation of crowdsourced studies: scientific, philosophical, etc.
What else is needed?
Blood tests 2.0
Boilerplate tools for collaborative health
Image credit: http://www.digitalculture-ed.net

Engaging personal health collaborators
Construct relevant value propositions to diverse target markets
Make participation fun and easy
Frame with nomenclature
Enhancement, optimization, improvement
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
Needs: obtain information and take action
The health decision maker
1 55 year old women are the biggest health decision makers in the US
Education, clearly digestible information, service comparison, recommendations
Layperson, health
decision maker 1
Rapid information access, research references, custom configurability, personal data upload, search
Health optimizer
Health professional
Accessible technical information that can be verified and turned into actions
Image credits: www.ehow.com, www.DIYgenomics.org, ergonomic-office-supplies.com

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
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.com

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
Image credit: http://efx3.com

What else is needed? Blood Tests 2.0
Low-cost home-administered self-read finger-stick blood, urine, saliva tests:
Traditional blood tests (Homocysteine, Vitamin B-12, Folate, Vitamin D, Creatinine, eGFR, Cortisol, Calcium, Iron)
Hormones (Estrogen, Progesterone, Testosterone, Estradiol)
Immune system: CD4, CD8/CD28 ratio, IL-1, IL-6
Chemical / h eavy metal burden: mercury, cadmium, lead, tin
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
Boilerplate tools for study design and operation:
Study design template
http://www.diygenomics.org/files/DIYgenomics-study-design-template-blank.doc
Sample informed consent form
http://www.diygenomics.org/files/informed_consent.doc
Study budget template http://www.diygenomics.org/files/budget.xls
Recruitment and marketing
Study flyers http://www.diygenomics.org/files/multistudy_flyer.doc, http://www.diygenomics.org/files/TA65_flyer.doc, http://www.diygenomics.org/files/MTHFR_flyer.doc
Conference poster http://www.diygenomics.org/files/DIYgenomics_poster.ppt
Participant recruiting plan http://blog.genomera.com/how-to-recruit-for-your-citizen-science-study
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

Agenda

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.
A new model of health and health care

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

But wait… Image credit: http://www.sldesigns.com Drawbacks of participative 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 systems

Participative health summary
The right solution at the right time
Embedded in the public health ecosystem
Biology: infotech transistor of the 21 st century
Advances in participant-driven research and medicine
Participative health is integral to realizing the personalized, preventive medicine of the future
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
Uses: cell-replacement therapies, and disease modeling, drug discovery, and drug toxicity screening
Stem cell therapy applications in over 50 diseases
Heart, lung, neurodegenerative, eye disease, cancer, HIV (cure)
Clinical use and clinical trials
Dendreon’s Provenge prostate cancer, Geron spinal cord injury, Fibrocell’s laViv wrinkles, skin substitutes (Apligraf, Dermagraft)
Stem cell policy issues
Medical tourism, standards for large-scale stem cell manufacturing, and lingering embryonic stem cells use
Image credit: http://stemcellresources.org Source: Swan, M. Steady Advance of Stem Cell Therapies. Rejuvenation Research. 2011. Forthcoming.

Stem cell therapies: contemporary science
Direct reprogramming of cells from one lineage to another without returning to pluripotency as an intermediary step
Improved means of generating and characterizing induced pluripotent cells
Progress in approaches to neurodegenerative disease
Source: Swan, M. Steady Advance of Stem Cell Therapies. Rejuvenation Research. 2011. Forthcoming. Image credit: stemcellumbilicalcordblood.com

Nanomedicine
Drug delivery
Organ repair
DNA nanotechnology
Synthetic biology
Nanomachines
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

Participant driven-health

by lablogga on Nov 08, 2011

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Participant driven-health — Presentation Transcript

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