The document discusses the author's journey into designing for health and understanding his own health metrics. He initially had little awareness or data about his health indicators. Over time, he began collecting his own health data, designing health tracking tools, and engaging with standards bodies. He prototyped concepts like a personal health card and health kiosk. The goal was to help individuals and medical professionals make more informed health decisions through accessible data and design.

1. Hacking
Health
Designing
for
and
understanding
my
health
Juhan
Sonin
March
2011

2. Your
health
data
is
going
digital.

3. Your
pets’
health
data
is
digital.

4. How
did
I
get
into
the
Design
of
Health?
I
didn’t
have
a
pulse
on
my
health,
let
alone
the
data.
Cholesterol
Check
at
MITRE
in
2006

5. 370
Total
Cholesterol
,
2006
Cheese
and
salami
was
coursing
through
my
blood
stream
(based
on
a
meal
the
night
before
the
cholesterol
test…)

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

7. 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

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

13. Started
collecOng
and
designing
the
basics…
Weight,
Waist
circumference,
Cholesterol,
Exercise,
Food
intake…

14. From
sketch
to
digital

15. Early
health
card
designs

16. 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…

17. How
do
I
become
an
informed
and
empowered
paOent?

18. HealthCard
was
born
Prototyped
with
doctors,
nurses,
emergency
responders…
and
oh
yea,
paOents.

19. Used
real
data…
my
own
data
Design
with
fake
data
=
fake
design
Real
data:
•needs
to
be
grokked
by
you
•has
min/max
values,
outliers
•needs
amplificaOon,
cleanup
•begets
real
feedback
+
forces
people
to
make
real
decisions

20. System
view
of
my
family’s
health

21. Followed
doctors
and
nurses
at
several
Boston
hospitals
to
SEE
Healthcare
in
acOon.
Partner
in
crime,
Rob
McCready
watching
surgery.

22. Our
forecast

23. Designing
a
beauOful
and
clinically
relevant
experience
without
beauOful
data
=
recipe
for
disaster.

24. So
we
got
into
the
data
+
standards
game:
hData
projectlaika.org projecthdata.org
Open
source
so^ware
has
become
part
of
the
CCHIT
hData
is
a
method
of
storing
and
exchanging
health
cerOficaOon informaOon
Laika
is
responsible
for
automaOng
data
Goal:
Influence/create
Health
IT
standards
to
ease
interoperability
tesOng
of
Electronic
Health
Record
implementaOon
and
speed
adopOon
systems
Why?
Complexity
and
design
of
current
standards
are
HITSP
Specs
on
ConOnuity
of
Care a
huge
barrier
to
adopOon
and
effecOve
usage
IHE
specs
on
Document
Exchange

25. US
Healthcard
Smartcard
to
standardize
the
healthcare
“entry
point”
transacOon
Prototype
US
Healthcard
data
model,
design,
and
explore
HHS
adopOon

26. Why
not
a
1040-­‐HC?

28. Health
devices
are
gehng
cheaper…
Costs
approaching
zero.
The
cost
of
data
is
also
approaching
zero.

29. Body
Probes
Torn
bicep

30. Daily
acOvity
dashboard
Using
2+
years
(0.999
human
“upOme”)

31. Wireless,
self-­‐syncing
devices

32. Part
of
my
daily
rouOne
At
work…

33. Monthly
Cholesterol
and
glucose
self
tesOng

34. Jumped
into
personal
genomics
23andMe
(for
all
my
family
members),
Personal
Genome
Project
ParOcipant

35. 23andme.com

36. Medical
home
IMPLANT
PULSE
OX
BLOOD-
PRESSURE
CUFF
Cell Phone
PEDOMETER Digital
Home
WEIGHT
SCALE PC
Internet Family Disease Healthcare Personal
FITNESS care management Health
EQUIPMENT providers
givers services Records
MEDICATION Personal Health System
TRACKING

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

38. 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…

39. Sensors
throughout
Spare
Bedroom Master
Bedroom
Bathroom
Living
Room
Kitchen

45. 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

46. So
we
prototyped
a
health
staOon.

48. Self-­‐service
health
kiosk
Brief
engagement
to
assess
current
health
Simple
and
minimally
invasive
Get
a
health
snapshot
or
monitor
changes
over
Ome
Open
planorm
Can
add
addiOonal
measurement
devices
Bluetooth,
Wifi,
and
web
accessible
Accessible
API
for
building
home
grown
apps
Measurements
Blood
pressure
Weight
Body
composiOon
HydraOon
Pulse
Temperature
Eyesight
Hearing
RespiraOon

49. Evolve
from
nurse-­‐aLended
to
self-­‐service
health
experience

52. 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.

54. 5
million
doctors
6.7
billion
pa,ents

56. 4.7
billion
cell
phones
6.8
billion
paOents

58. paOents
SCALE

59. 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)

67. hGraph
Compelling,
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
picture
Users
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
hScore
Single
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

73. hGraph
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

75. 85%
of
adults
have
a
cellphone
today…

76. The
Future:
Stage
zero
detecOon
90%
Survive 10%
Survive
Early
stage
detecDon Late
stage
detecDon

77. Special
thanks
to:
Rob
Dingwell
Andrew
Gregorowicz
Dirk
Knemeyer
Rob
McCready
Harry
Sleeper
Brian
Staats

78. Hacking
Health
Designing
for
and
understanding
my
health
Juhan
Sonin