The document discusses how disruptions to daily routines, such as those caused by the Nashville flood of 2010, can negatively impact health, especially for those with chronic conditions like diabetes. It describes interviews conducted with people with diabetes who were displaced by the flood and how they struggled to manage their condition without familiar routines, artifacts, and places that structured their care. One interview subject noted that the disruption threw her "way off track" with her medications and resulted in poor health outcomes that required increased treatment. The long term impacts could include increased health costs and decreased health status as routines and self-management are not easily re-established after a disruption.

1. Informa(on
infrastructures
and
everyday
lives:
recovering
health
a7er
a
disrup(on
Laurie
Love*
Novak,
PhD
Vanderbilt
University
Biomedical
Informa?cs
World
Informa?on
Architecture
Day:
Nashville
2013

2. How
is
health
achieved?

3. Scien?fic
feats
h*p://www.4-­‐traders.com/ISIS-­‐PHARMACEUTICALS-­‐INC-­‐9734/news/FDA-­‐Approves-­‐Sanofi-­‐s-­‐Kynamro-­‐to-­‐Treat-­‐Rare-­‐Cholesterol-­‐Disorder-­‐15980926/

4. Lucky
genes
h*p://images.sciencedaily.com/2008/05/080526155300-­‐large.jpg

5. Hard
work
h*ps://www.fitocracy.com/home/

6. Everyday
ac?vi?es
Taking
the
medicine

7. Everyday
ac?vi?es
Taking
the
medicine
Taking
the
walk

8. Everyday
ac?vi?es
Taking
the
medicine
Mowing
the
yard
Taking
the
walk

9. Everyday
ac?vi?es
Taking
the
medicine
Mowing
the
yard
Taking
the
walk
Packing
lunch

10. Everyday
ac?vi?es
Taking
the
medicine
Mowing
the
yard
Taking
the
walk
Packing
lunch
Making
dinner

11. Everyday
ac?vi?es
Remembering
the
inhaler
Taking
the
medicine
Mowing
the
yard
Taking
the
walk
Packing
lunch
Making
dinner

12. Everyday
ac?vi?es
Remembering
the
inhaler
Taking
the
medicine
Mowing
the
yard
Taking
the
walk
Packing
lunch
Avoiding
McDonald’s
Making
dinner

13. Everyday
ac?vi?es
Remembering
the
inhaler
Taking
the
medicine
Mowing
the
yard
Taking
the
walk
Packing
lunch
Avoiding
McDonald’s
Making
dinner
Grabbing
the
gym
bag

14. Everyday
ac?vi?es
Remembering
the
inhaler
Taking
the
medicine
Mowing
the
yard
Taking
the
walk
Packing
lunch
Avoiding
McDonald’s
Making
dinner
Checking
the
blood
sugar
Grabbing
the
gym
bag

15. Through
everyday
ac?vi?es
We
maintain
rou(nes

16. Through
everyday
ac?vi?es
We
maintain
rou(nes
We
change
rou(nes

17. The
science
of
rou?nes
• Repeated
pa*erns
of
ac?vity
• Structured
using
–
– Ar?facts
– People
(or
pets!)
– Events,
or
temporal
markers
– Places
• Frequently
disrupted

18. Diabetes
and
the
Nashville
Flood
• 13
in-­‐depth
interviews
– People
with
diabetes
who
were
displaced
by
the
flood.
• Survey
– Developed
by
students
from
the
Vanderbilt
School
for
Science
and
Math
– 400
mailed,
59
returned
– Asked
about
impact
on
home
and
health

19. Interviews
• Ages
41-­‐86
• Type
1
and
Type
2
diabetes
• Diagnosed
for
1-­‐32
years
• Number
of
medica?ons:
1-­‐13
• A
narra?ve
approach:
– Described
diabetes
management
rou?nes
– Told
us
the
story
of
the
flood,
displacement
and
aeermath
– Described
how
they
are
managing
now

23. “Ms.
Smith”
Female
subject,
50
years
old,
diabe?c
for
32
years

24. Disrup?ons
Female
subject,
50
years
old,
diabe?c
for
32
years
“So
then
I
called
Direct
TV…
I
told
them
about
the
house
being
under
water,
and
the
lady
said,
well
we
show
that
you
have
three
boxes…
plus
the
satellite
dish.
I
said,
yes
ma'am,
and
what
part
of
that
did
you
not
understand.
The
house
is
under
water.
Well,
Ms.
Smith,
we
really
need
to
get
those
boxes.
I
said,
okay,
fine,
then
you
send
a
tech
out,
but
you
tell
him
to
be
sure
and
be
prepared
with
scuba
[gear]…
because
chances
are
these
boxes
are
down
the
Harpeth
River
right
now….

25. Disrup?ons
Female
subject,
50
years
old,
diabe?c
for
32
years
I
think
I
was
just
in
survival
right
then…
because
I
remember
doing
that,
but
I
can't
tell
you
what
I
did
on
Monday...

26. Disrup?ons
Female
subject,
50
years
old,
diabe?c
for
32
years
Thursday,
I
had
a
friend…
who
was
a
diabetes
nurse,
and
she
said,
have
you
checked
your
sugar
lately?
And
I
just
kind
of
looked
at
her.

27. Disrup?ons
Female
subject,
50
years
old,
diabe?c
for
32
years
…once
I
got
back
to
the
house
that
I
felt
like
was
home…
I
[felt]
like,
okay,
let's
get
back
into
the
groove
of
things.”

28. Long
term
impact
of
disrup?ons
I
can
tell
you
that
being
displaced
totally
threw
me
way
off
track
when
it
came
to
taking
my
meds.
When
I
went
to
see
my
doctor
in
July,
the
results
of
my
A1C
test
were
awful.
I
had
to
double
my
medica6on
and
agree
to
3
month
tes6ng
intervals
instead
of
the
6
months
I
had
been
doing...
Since
May
1
I
have
gained
20
pounds
because
I
now
live
in
an
apartment.
Most
of
my
exercise
came
from
doing
yard
work
and
now
I
don't
have
a
yard.
-­‐
50
year
old
male
• Increased
cost
to
the
health
system
• Decreased
health
status
of
vic?ms

29. Some
interes?ng
?dbits
• All
subjects
evacuated
with
a
cell
phone
I
don't
know
how
it
made
it,
but…
they
had
my
cellphone.
When
we
leV
my
bedroom
to
go
out
the
door,
the
water
was
already…
up
past
my
waist.
• Support
systems
varied
widely
I
have
had
so
much
support
from
my
family
it's
unbelievable.
Vs.
…my
own
brother
didn't
come
help,
you
know.
He
lives
about
two
miles
from
here.

30. Rou?nes
were
untethered
from
structural
elements
• Familiar
places
(homes)
were
gone
or
inaccessible
• Daily
temporal
pa*erns
changed
• Ar?facts
used
to
maintain
rou?nes
were
gone
or
different
•
Exis?ng
challenges
became
even
more
complex

31. Is
this
an
opportunity
to
invent
something
useful?

32. Create
a
link
between
suppor?ng
infrastructure
and
everyday
ac?vity
Inunda?on
maps
• Affected
households
Mobile
phones
Electronic
• Tex?ng
health
record
• Loca?on
• Diagnoses
• Useful
apps
• Prescrip?ons
• Care
plan
h*p://www.cdc.gov/niosh/docs/99-­‐101/
Retail
Pharmacy
• Prescrip?ons

33. Create
a
link
between
suppor?ng
infrastructure
and
everyday
ac?vity
• Outreach
to
individuals
and
families
who
may
have
been
affected
by
a
disaster,
based
on
geocoded
images
linked
to
addresses
in
EHR
• Automated
reminders
to
support
self
care
– Checking
blood
sugar
– Taking
medica?ons
– Appointments
– Refill
reminders

34. The
linkage
may
func?on
as
a
“tether”
between
the
individual
and
the
health
system
Geocoded
addresses
• Where
we
live
Mobile
phones
• Tex?ng
• Loca?on
Electronic
• Useful
apps
health
record
• Diagnoses
Other
data
• Prescrip?ons
• Climate/weather
• Care
plan
• Crime
rates
• Food
deserts
• Neighborhood
walkability
Retail
Pharmacy
• Prescrip?ons

35. The
linkage
may
func?on
as
a
“tether”
between
the
individual
and
the
health
system
• Alerts
when
temperature/
air
pollu?on
create
unsafe
condi?ons
for
cardiac
pa?ents
• Customized
care
to
assist
people
in
finding
healthy
food,
pharmacies,
other
resources
near
where
they
live
or
work

36. But
wait!
Ins6tu6onal
tether
to
individuals?
• At
what
point
can
the
rela?onship
not
be
replaced
by
an
algorithm?

37. Bowker,
et
al:
“Informa?on
infrastructure
as
distribu?ons
along
technical/social
and
global/local
axes”
Bowker,
Geoffrey
C.,
et
al.
"Toward
informa?on
infrastructure
studies:
ways
of
knowing
in
a
networked
environment."
InternaWonal
handbook
of
internet
research
(2010):
97-­‐117.

38. Gra?tude
goes
to:
• Research
subjects
• Chris
Simpson,
MA
• Co-­‐inves?gators
Shilo
Anders,
PhD
and
Kim
Unertl,
PhD
• Funding
through
Vanderbilt
CTSA
grant
UL1
RR024975
from
NCRR/NIH

39. Ques(ons?

40. A
Music
City
Disaster
• I
lost
some
valuable
guitars.
• So,
I
grabbed
all
the
guitars
up,
but…
I
couldn't
get
the
drums
and
all
that
stuff.
• the
thing
that
I
miss
[are]
some
songs
that
I
had
wriXen,
and
I
don't
have
any
other
copies
of
them.