Hacking  HealthDesigning  for  and  understanding  my  health

Juhan  Sonin

March  2011

Your  health  data  is  going  digital.

Your  pets’  health  data  is  digital.

Cholesterol  Check  at  MITRE  in  2006

I  didn’t  have  a  pulse  on  my  health,  let  alone  the  data.

How  did  I  get  into  the  Design  of  Health?

Cheese  and  salami  was  coursing  through  my  blood  stream  (based  on  a  meal  the  night  before  the  cholesterol  test…)

370  Total  Cholesterol  ,  2006

I  had  no  clue  what  my  health  metrics  were.I  had  a  beLer  pulse  on  the  health  of  my  car.

and  the  Problem  is…

Increasingly  complex  systems– Tool  and  Methodology  gap

Decision  makers  are  swamped  with  conflicDng  data– Our  work  is  increasingly  mulD-­‐dimensional  (not  a  flat-­‐decision  space)

ArDfacts  driving  decisions  need  to  be  coordinated,  presented

Minimal  transparency  into  key  health  metrics

How  do  I  (as  a  pa7ent,  nurse,  doctor,  proxy)  make  quicker,  more  accurate  decisions?

Started  collecOng  and  designing  the  basics…

Weight,Waist  circumference,Cholesterol,Exercise,Food  intake…

From  sketch  to  digital

Early  health  card  designs

Got  a  checkup.First  Ome  in  6  years.

But…The  doctor’s  back  was  to  me  while  he  asked  me  ques7ons  (and  then  he  typed  the  answers  into  the  computer),  

zero  ques7ons  about  Life  outside  of  tradi7onal  health  info,

no  physical  or  emailed  takeaways  of  next  steps  from  the  exam…

How  do  I  become  an  informed  and  empowered  paOent?

HealthCard  was  born

Prototyped  with  doctors,  nurses,  emergency  responders…  and  oh  yea,  paOents.

Used  real  data…  my  own  data

Design  with  fake  data  =  fake  designReal  data:•needs  to  be  grokked  by  you•has  min/max  values,  outliers•needs  amplificaOon,  cleanup•begets  real  feedback  +  forces  people  to  make  real  decisions

System  view  of  my  family’s  health

Followed  doctors  and  nurses  at  several  Boston  hospitals  to  SEE  Healthcare  in  acOon.

Partner  in  crime,  Rob  McCready  watching  surgery.

Our  forecast

Designing  a  beauOful  and  clinically  relevant  experience  without  beauOful  data  =

recipe  for  disaster.  

projectlaika.orgOpen  source  so^ware  has  become  part  of  the  CCHIT  cerOficaOon

Laika  is  responsible  for  automaOng  data  interoperability  tesOng  of  Electronic  Health  Record  systems

HITSP  Specs  on  ConOnuity  of  CareIHE  specs  on  Document  Exchange

So  we  got  into  the  data  +  standards  game:

projecthdata.orghData  is  a  method  of  storing  and  exchanging  health  informaOon

Goal:  Influence/create  Health  IT  standards  to  ease  implementaOon  and  speed  adopOon

Why?  Complexity  and  design  of  current  standards  are  a  huge  barrier  to  adopOon  and  effecOve  usage

hData

Smartcard  to  standardize  the  healthcare  “entry  point”  transacOon

Prototype  US  Healthcard  data  model,  design,  and  explore  HHS  adopOon

US  Healthcard

Why  not  a  1040-­‐HC?

Health  devices  are  gehng  cheaper…Costs  approaching  zero.

The  cost  of  data  is  also  approaching  zero.

Body  Probes

Torn  bicep

Daily  acOvity  dashboard

Using  2+  years  (0.999  human  “upOme”)

Wireless,  self-­‐syncing  devices

Part  of  my  daily  rouOneAt  work…

MonthlyCholesterol  and  glucose  self  tesOng

Jumped  into  personal  genomics23andMe  (for  all  my  family  members),  Personal  Genome  Project  ParOcipant

23andme.com

Medical  home

Familycare

givers

Diseasemanagement

services

PersonalHealth

RecordsHealthcareproviders

DigitalHome

Cell Phone

PC

Personal Health System

PEDOMETER

BLOOD-PRESSURE

CUFF

MEDICATIONTRACKING

WEIGHTSCALE

FITNESSEQUIPMENT

IMPLANTPULSE

OX

Internet

Telemedicine

Intel  Health  Guide:  It  integrates  personal  communicaDon  with  the  doctor,  medicaDon  reminders,  educaDonal  informaDon,  and  videoconferencing  for  the  home.

Assisted  living

I  opened  the  door…

I’m  watching  TV…

I’m  going  to  bed…

Sensors:  Mo7on,  Fire/Smoke/CO2,  Occupancy  (Bed/Chair),  Use  (Door,  Stove,  Fridge,  Tub),  Loca7on  (Alzheimer's),  Fall  Alarms,  Water  flow…  

Sensors  throughout

Bathroom

KitchenLiving  Room

Master  BedroomSpare  Bedroom

Enable  online  clinic  for  the  “pracOce  of  medicine”

Evolve  the  FOSS  “Healthcare  as  a  so^ware  service”  model

School  nurse  at  first;evolve  to  state-­‐of-­‐the-­‐art  ambulatory  screen  clinic  (diabetes,  obesity,  cardiovascular,  asthma,  allergies)  in  2  years

So  we  prototyped  a  health  staOon.

Self-­‐service  health  kioskBrief  engagement  to  assess  current  healthSimple  and  minimally  invasiveGet  a  health  snapshot  or  monitor  changes  over  Ome

Open  planormCan  add  addiOonal  measurement  devicesBluetooth,  Wifi,  and  web  accessibleAccessible  API  for  building  home  grown  apps

MeasurementsBlood  pressureWeightBody  composiOonHydraOonPulseTemperatureEyesightHearingRespiraOon

Evolve  from  nurse-­‐aLended  toself-­‐service  health  experience

How  do  you  get  a  pulse  on  key  health  metrics  without  a  single  tear?

Early  detecOon  of  chronic  diseases  will  be  as  easy  as  carrying  your  cell  phone  in  your  pocket.

Engaged  paOents  will  increasingly  self-­‐check  and  self-­‐monitor  using  bloodless,  self-­‐administered  medical  tests.

5  million  doctors

6.7  billion  pa,ents

4.7  billion  cell  phones

6.8  billion  paOents

paOents

SCALE

mHealth  Axioms

Bring  the  examinaDon  room  to  the  paDent

Bring  the  collecDve  experDse  of  the  pracDce,  the  standard  of  care,  to  the  paDent’s  bedside  or  home

Migrate  from  a  system  of  episodic  evaluaDon  to  a  system  of  conDnuous  assessment

Expect  paDents  and  their  families  to  be  their  own  primary  care  provider  (key  member  of  the  care  team)

hGraphCompelling,  standardized  visual  representa7ons  of  a  pa7ent’s  health  status…on  the  celltop

Designed  to  increase  awareness  of  the  individual’s  factors  that  can  affect  one’s  health

Open  source  healthcare  applica7on  Created  for  mobile  devices,  star7ng  with  the  iPhone  and  iPad

Your  health  in  one  pictureUsers  provide,  view,  share,  and  understand  a  holis7c  view  of  their  health    

Based  on  an  individual’s  health  data,  iden7fies  where  an  individual’s  health  numbers  are,  and  where  they  should  be

Pa7ent  focused,  with  professional  clinical  relevance  

hScoreSingle  aggregated  number  ranging  from  1-­‐100  that  represents  best  knowledge  status  of  an  

individual’s  health

Experimental  measure  correlated  with  sta7s7cal  data  from  open  sources

Used  as  status    indicator  for  current  plan  of  care

Recent  updates  can  trigger  “just  in  Dme”  healthcare  consults

AddiDonal  mHealth  monitors  augment  hGraph  scope  and  real-­‐Dme  nature

Live  consults  with  healthcare  professionals

hGraph

85%  of  adults  have  a  cellphone  today…

The  Future:  Stage  zero  detecOon

90%  Survive 10%  Survive

Early  stage  detecDon Late  stage  detecDon

Special  thanks  to:Rob  DingwellAndrew  GregorowiczDirk  KnemeyerRob  McCreadyHarry  SleeperBrian  Staats

Hacking  HealthDesigning  for  and  understanding  my  health

Juhan  Sonin