Terrific presentation by Team Novo Nordisk to the DOC (diabetes online community) at the American Diabetes Association's scientific conference, New Orleans, June, 2016. [Shared with permission]
4. 2016 inspire Ÿ educate Ÿ empower4
PRO CYCLING Team
Introduc8on
• Global
all-‐diabetes
sports
team
of
cyclists,
triathletes
and
runners,
spearheaded
by
the
world’s
first
all-‐
diabetes
professional
cycling
team
– Nearly
100
athletes
from
17
countries
• Mission:
Inspire,
Educate
and
Empower
people
affected
by
diabetes
• Goal:
compete
in
the
Tour
de
France
by
2021
(100th
anniversary
of
discovery
of
insulin)
5. 2016 inspire Ÿ educate Ÿ empower5
PRO CYCLING
Nearly
100
Athletes
from
17
Countries
All
living
with
diabetes
Team
Novo
Nordisk
athletes
will
compete
in
over
500
events
in
2016
6. 2016 inspire Ÿ educate Ÿ empower6
PRO CYCLING
Team
Type
1
Launched
Team
Novo
Nordisk
Launched
• World’s
First
All-‐
Diabetes
Team
Won
RAAM
Set
new
record
Elite
Team
–
All
Diabetes
• Won
RAAM
2
more
2mes
(2009-‐10)
• Launched
Triathlon
&
T2
teams
• Finished
Run
Across
America
(2011)
Pro
Cycling
Team
–
Mixed
Diabetes
• Ranked
24th
in
the
world
(2012)
• Competed
in
5+
World
Tour
Races
• 1st
Major
T1
Win
–
Tour
de
Beauce
(2011)
Finished
Race
Across
America
(RAAM)
Lost
by
5
minutes
Team
History
2006-‐2013
2006
2007
2008
2009
2010
2011
2012
2013
7. 2016 inspire Ÿ educate Ÿ empower7
PRO CYCLING
Team
History
2006
to
2016
Team
Novo
Nordisk
Global
all-‐diabetes
sports
team
of
cyclists,
triathletes
and
runners,
spearheaded
by
the
world’s
first
all-‐diabetes
professional
cycling
team.
Team
Type
1
Founda8on
Global
access
to:
• Medicine
• Educa2on
• Empowerment
8. 2016 inspire Ÿ educate Ÿ empower8
PRO CYCLING
2016
Teams
#
From
Pipeline
Pro
17
14
(78%)
Development
18
18
(100%)
Junior
12
12
(100%)
Talent
ID
Camp
45
-‐-‐
Elite
Cycling,
Run,
Tri,
T2
47
-‐-‐
Building
our
Pipeline
of
Athletes
Looking
for
Talented,
Endurance
Athletes
with
Diabetes
9. 2016 inspire Ÿ educate Ÿ empower9
PRO CYCLING
Inspire,
Educate
and
Empower
Everyone
Affected
By
Diabetes
Global
Exposure
Digital
.-‐-‐-‐
PR
&
Media
-‐-‐-‐
Outreach
#1
in
Pro
Cycling
&
Diabetes
1,800+
Ar8cles
Per
Year
365+
Diabetes
Community
Events
10. 2016 inspire Ÿ educate Ÿ empower10
PRO CYCLING
DIABETES
LANGUAGE,
MYTHS
&
STIGMA
Why
Are
We
Talking
About
This?
12. 2016 inspire Ÿ educate Ÿ empower12
PRO CYCLING
Team
Survey
Validates
Diabetes
Misconcep8ons
S8ll
Exist
People
with
Diabetes,
Parents
and
Partners
Source:
Team
Novo
Nordisk
Se/ng
the
Record
Straight
Survey.
310
respondents.
June
2016.
Which
ques8ons
have
you
(or
your
child
or
partner
with
diabetes)
been
asked?
Ques8on
Been
Asked
People
with
type
1
diabetes
can
only
eat
special
foods-‐
right?
86%
Did
you
get
diabetes
by
ea2ng
poorly
and
not
taking
care
of
yourself?
67%
Do
you
have
the
good
kind
or
bad
kind
of
diabetes?
62%
Can
people
with
diabetes
live
a
long,
healthy
life?
53%
Can
you
outgrow
diabetes?
44%
Is
your
diabetes
contagious?
23%
13. 2016 inspire Ÿ educate Ÿ empower13
PRO CYCLING
The
“good”
kind
of
diabetes.
The
“bad”
kind
of
diabetes.
Inconsistent
percep8ons
of
“good”
vs
“bad”
kind
of
diabetes
People
with
Diabetes,
Parents
and
Partners
Source:
Team
Novo
Nordisk
Se/ng
the
Record
Straight
Survey.
310
respondents.
June
2016.
14. 2016 inspire Ÿ educate Ÿ empower14
PRO CYCLING Ques8ons
to
think
about
for
later
Diabetes
Language,
Myths
and
S2gma
• What
challenges
do
you
face?
• How
can
we
help
each
other
address
these
challenges?
15. 2016 inspire Ÿ educate Ÿ empower15
PRO CYCLING Diabetes
Myths
&
S8gma
Myth
• an
idea
or
story
that
is
believed
by
many
people
but
that
is
not
true
S8gma
• a
set
of
nega<ve
and
o=en
unfair
beliefs
that
a
society
or
group
of
people
have
about
something
Source:
hep://www.merriam-‐webster.com/
16. 2016 inspire Ÿ educate Ÿ empower16
PRO CYCLING
#1
Response:
“MORE”
Team
Survey
People
with
Diabetes,
Parents
and
Partners
Source:
Team
Novo
Nordisk
Se/ng
the
Record
Straight
Survey.
310
respondents.
June
2016.
I
wish
other
people
knew
_____
about
diabetes.
17. 2016 inspire Ÿ educate Ÿ empower17
PRO CYCLING
S8gma
Can
Lead
to
Discrimina8on
DAWN2
Study
Source:
hep://www.dawnstudy.com/content/dam/Dawnstudy/AFFILIATE/www-‐dawnstudy-‐com/Home/Common_update/
Changing_Diabetes_2013_DAWN2_infographic_discrimina2on_Partners.png
18. 2016 inspire Ÿ educate Ÿ empower18
PRO CYCLING
Discrimina8on
in
Employment
Andrea
Peron
(ITA)
-‐
Pro
Cyclist
• Started
racing
at
young
age
• Diagnosed
with
type
1
diabetes
at
16
– Doctor
encouraged
to
con2nue
racing
• Turned
away
from
a
pro
contract
due
to
diabetes
• Joined
Team
Novo
Nordisk
in
2013
• Race
Results
– 4
podiums
– 8
top
tens
19. 2016 inspire Ÿ educate Ÿ empower19
PRO CYCLING
Professor
Jane
Speight,
PhD
CPsychol
AFBPsS
The
Australian
Centre
for
Behavioural
Research
in
Diabetes
Aims
to
increase
our
understanding
of
what
it’s
like
living
with
diabetes
• Research
centre:
crea2ng
knowledge
and
impact
• Resource:
for
clinicians,
researchers
and
policy
makers
• Voice:
influencing
policy
and
prac2ce
E:
jspeight@acbrd.org.au
@ACBRD
@janespeight
20. 2016 inspire Ÿ educate Ÿ empower20
PRO CYCLING
Descrip2on
Systema2c
review
Interviews
with:
-‐
adults
with
T1D
-‐
adults
with
T2D
Measurement
Development
and
valida2on
of
self-‐report
scales
Interven2on
Interven2ons
to
reduce
s2gma:
• Policy
• Prac2ce
• Individual
The
Australian
Centre
for
Behavioural
Research
in
Diabetes
Our
diabetes
s2gma
research
program
21. 2016 inspire Ÿ educate Ÿ empower21
PRO CYCLING Systema8c
review
Key
messages
• General
public
doesn’t
consider
diabetes
to
be
a
s2gma2sed
condi2on
• People
with
diabetes
report
s2gma:
feeling
judged
&
monitored
• Diabetes
s2gma
may
have
nega2ve
consequences
• Research
in
the
area
is
scarce
&
limited
by
absence
of
standardised
measurement
22. 2016 inspire Ÿ educate Ÿ empower22
PRO CYCLING A
framework
for
diabetes-‐related
s8gma
Experiences of stigma Consequences of stigma
Psychological
• Fear
• Embarrassment
• Self-blame
• Low self-
esteem/self-
efficacy
• Worry/ anxiety
• Depression
• Distress
• Loneliness
Behavioural
• Concealment
• Suboptimal self-
care
• Psychological
insulin resistance
• Reduced social &
occupational
functioning
Medical
Sub-optimal
outcomes, e.g.
HbA1c, BP, and
long-term
comp-lications
Identity threat
Features of diabetes
and its management
•Needle use
•Hypoglycaemia
•Dietary modifications
•Overweight/ obesity
•Greater utilisation of
healthcare resources
•Deviance from societal
values
Psychosocial
mechanisms
driving stigma
Fear, blame and
disgust arising
from negative
stereotypes about
diabetes and its
management
Perceived
stigma
•Being
judged
•Being
monitored
by others
•Being
unfairly
treated
Stigmatising
attributions
•Unhealthy
•Fat
•Lacking
control
•Lazy
•Dirty
•Draining
societal
resources
Stigmatising
practices
•Restrictions
on work/
employment
opportunities
•Loss of
relationship
•Restrictions
in travel
•Being
treated
differently
•Mistaken for
other
stigmatised
medical
conditions
Sources of stigma
•Individuals
•Groups
•Communities
•Health professionals
•Person/ people with
diabetes
Mitigating strategies
Education,advocacy, social marketing, counselling, social support, health promotion
A framework for diabetes-related stigma
23. 2016 inspire Ÿ educate Ÿ empower23
PRO CYCLING Exploring
diabetes
s8gma
‘I call it the blame and shame disease’:
a qualitative study about perceptions
of social stigma surrounding type 2
diabetes
Jessica L Browne,1,2
Adriana Ventura,1,3
Kylie Mosely,4
Jane Speight1,2,5
To cite: Browne JL,
Ventura A, Mosely K, et al.
‘I call it the blame and shame
disease’: a qualitative study
about perceptions
of social stigma surrounding
type 2 diabetes. BMJ Open
2013;3:e003384.
doi:10.1136/bmjopen-2013-
003384
ABSTRACT
Objectives: While health-related stigma has been the
subject of considerable research in other conditions
(obesity and HIV/AIDS), it has not received substantial
attention in diabetes. The aim of the current study was
to explore the social experiences of Australian adults
living with type 2 diabetes mellitus (T2DM), with a
particular focus on the perception and experience of
diabetes-related stigma.
Design: A qualitative study using semistructured
Strengths and limitations of this study
▪ This qualitative study is the first to describe, in
detail, the perceptions and experiences of
diabetes-related stigma from the perspective of
adults with type 2 diabetes mellitus (T2DM).
▪ While the small sample size may limit the repre-
sentativeness of the findings, efforts were made
to include a broad cross-section of adults with
T2DM and data saturation was achieved.
Open Access Research
group.bmj.comon November 19, 2013 - Published bybmjopen.bmj.comDownloaded from
‘I’m not a druggie, I’m just a diabetic’:
a qualitative study of stigma from the
perspective of adults with type 1
diabetes
Jessica L Browne,1,2
Adriana Ventura,1,3
Kylie Mosely,4
Jane Speight1,2,5
To cite: Browne JL,
Ventura A, Mosely K, et al.
‘I’m not a druggie, I’m just a
diabetic’: a qualitative study
of stigma from the
perspective of adults with
type 1 diabetes. BMJ Open
2014;4:e005625.
doi:10.1136/bmjopen-2014-
005625
▸ Prepublication history for
this paper is available online.
To view these files please
visit the journal online
(http://dx.doi.org/10.1136/
bmjopen-2014-005625).
Received 6 May 2014
Revised 8 July 2014
Accepted 9 July 2014
ABSTRACT
Objectives: While health-related stigma has been the
subject of considerable research in other conditions
(eg, HIV/AIDS, obesity), it has not received substantial
attention in diabetes. Our aim was to explore
perceptions and experiences of diabetes-related stigma
from the perspective of adults with type 1 diabetes
mellitus (T1DM).
Design: A qualitative study using semistructured
interviews, which were audio recorded, transcribed and
subject to thematic analysis.
Setting: All interviews were conducted in non-clinical
settings in metropolitan areas of Victoria, Australia.
Participants: Adults aged ≥18 years with T1DM
living in Victoria were eligible to take part. Participants
were recruited primarily through the state consumer
organisation representing people with diabetes. A total
of 27 adults with T1DM took part: 15 (56%) were
women; median IQR age was 42 (23) years and
diabetes duration was 15 (20) years).
Results: Australian adults with T1DM perceive and
experience T1DM-specific stigma as well as stigma-by-
association with type 2 diabetes. Such stigma is
characterised by blame, negative social judgement,
stereotyping, exclusion, rejection and discrimination.
Participants identified the media, family and friends,
healthcare professionals and school teachers as
sources of stigma. The negative consequences of this
stigma span numerous life domains, including impact
on relationships and social identity, emotional well-
being and behavioural management of T1DM. This
stigma also led to reluctance to disclose the condition
experienced exclusion, rejection, blame,
stereotyping and/or status loss.1 2
This is a
destructive social phenomenon; one that has
been observed and studied extensively in
conditions such as HIV/AIDS,3–5
obesity,6–9
and mental illness.10–14
Type 1 diabetes melli-
tus (T1DM) is a serious chronic condition
that requires unrelenting self-management
(including multiple daily insulin injections
or insulin pump therapy), and can impact
on both quantity and quality of life.
Traditionally, T1DM research has focused on
the biomedical aspects of aetiology and man-
agement of the condition. However, recent
Strengths and limitations of this study
▪ To our knowledge, this study is the first to
conduct a systematic and in-depth examination
of the perception and experience of diabetes-
related stigma from the perspective of adults
with type 1 diabetes mellitus.
▪ Strengths of this study include the novelty of the
topic of enquiry, and the richness of data col-
lected through in-depth interviewing.
▪ Limitations of this study include the fact that
people born outside Australia and those living in
rural/regional areas were under-represented in
our sample.
Open Access Research
group.bmj.comon July 24, 2014 - Published bybmjopen.bmj.comDownloaded from
Group N Women Age (yrs)
Median (IQR)
Diabetes duration (yrs)
Median (IQR)
T1D 27 15 (56%) 42 (23) 15 (20)
T2D 25 12 (48%) 61 (15) 5 (7)
Blame
“I'm
self-‐conscious
about
ea2ng
sweet
things
around
people…
people
do
judge
you
or
blame
you”
T1D,
woman,
aged
29
“I
find
a
lot
of
people,
they
like
to
think
of
you
as
being
the
culprit.
In
fact
I
actually
had
one
person
say
‘well
you’ve
dug
your
grave
with
your
own
teeth’”
T2D,
man,
aged
67
Stereotyping
“…damaged
goods
I
guess.
People
think
you’re
more
broken
or
damaged
or
sicker
than
you
really
are”
T1D,
woman,
aged
21
“The
usual:
obese,
overweight,
doesn’t
do
any
exercise,
very
lazy”
T2D,
woman,
aged
20
Discrimina8on
“As
soon
as
I
told
my
employer
that
I
had
a
medical
problem
and
what
it
was
he
wrote
back
to
me
and
said
that
he
couldn't
guarantee
my
future
career”
T1D,
man,
aged
68
“If
I
apply
for
a
job
that
I
would
be
discriminated
against
on
the
basis
of
that.
That’s
a
fear”
T2D,
woman,
aged
59
24. 2016 inspire Ÿ educate Ÿ empower24
PRO CYCLING
“I
don’t
tell
everybody
everywhere
that
I’ve
got
diabetes...I
think
some2mes
I
worry
about
it
perhaps
jeopardising
opportuni2es,
like
discrimina2on”
“I
tell
them
but
I
don't
think
people
want
to
know...
People
don't
like
you
telling
them”
“I
haven’t
told
[my
partners
family]
I’m
not
sure
that
that’s
not
wan2ng
them
to
know,
it’s
actually
not
wan2ng
to
have
to
deal
with
the
ques2ons...
all
my
life
I’ve
been
afraid
of
judgment
and
I’ve
hidden
informa2on.
It’s
a
bit
of
a
habit,
worrying
about
what
people
are
going
to
think”
“That
doesn’t
worry
me
at
all
and
a
lot
of
them,
my
friends
and
stuff,
they’ve
all
known
someone
with
diabetes”
“I
don't
hide
it,
I
say
"sorry,
I've
got
to
eat
something,
I'm
diabe2c”
“So
prospec2ve
employers,
not
un2l
axer
they
got
to
know
me
and
then
I’m
okay”
How
do
you
feel
about
other
people
knowing
you
have
diabetes?
25. 2016 inspire Ÿ educate Ÿ empower25
PRO CYCLING The
Diabetes
S8gma
Assessment
Scales
Type
2
scale
example
items
Strongly
disagree
Disagree
Unsure
Agree
Strongly
agree
I'm
ashamed
of
having
type
2
diabetes
1
2
3
4
5
Some
people
see
me
as
a
lesser
person
because
I
have
type
2
diabetes
1
2
3
4
5
Type
1
scale
example
items
Strongly
disagree
Disagree
Unsure
Agree
Strongly
agree
Telling
people
I
have
type
1
diabetes
is
just
not
worth
the
grief
1
2
3
4
5
Some
people
make
unfair
assump2ons
about
what
I
can
and
cannot
do
because
of
my
type
1
diabetes
1
2
3
4
5
26. 2016 inspire Ÿ educate Ÿ empower26
PRO CYCLING
Poster
66-‐LB
The
Diabetes
S8gma
Assessment
Scales
• 1,964
adults
completed
– DSAS-‐1:
900
T1D;
59%
women;
mean
age
44yrs;
dura2on
19yrs;
34%
using
insulin
pump
– DSAS-‐2:
1,062
T2D;
43%
women;
mean
age
61
yrs;
dura2on
11
yrs;
43%
using
insulin
• Two
19-‐item
scales,
valid
&
reliable
• Associa2ons
with:
– depressive
symptoms:
r=0.44-‐0.48,
p<0.001
– anxiety
symptoms:
r=0.46,
p<0.001
– self-‐esteem:
r=-‐052,
p<0.001
– diabetes
distress:
r=0.63-‐0.67,
p<0.001
16%
19%
with
T1D
have
elevated
scores
(DSAS-‐1)
with
T2D
have
elevated
scores
(DSAS-‐2)
27. 2016 inspire Ÿ educate Ÿ empower27
PRO CYCLING
We
can
NOW
quan8fy
the
extent
&
impact
of
s8gma
Diabetes
s2gma
Self-‐care
&
clinical
outcomes
Emo2onal
well-‐being
Self-‐
esteem
&
self-‐
efficacy
Healthcare
engage-‐
ment
Other?
Social
support
Develop
&
evaluate
interven8ons:
-‐ Individual
-‐ Prac2ce
-‐ Environment
-‐ Policy
28. 2016 inspire Ÿ educate Ÿ empower28
PRO CYCLING Diabetes
Language
Language
• the
system
of
words
or
signs
that
people
use
to
express
thoughts
and
feelings
to
each
other
Source:
hep://www.merriam-‐webster.com/
29. 2016 inspire Ÿ educate Ÿ empower29
PRO CYCLING
Mee8ng
with
NBC
Pro
Cycling
Announcers
Phil
Liggee
and
Paul
Sherwen
1)
Before
Mee8ng
• “Team
Novo
Nordisk
riders
suffer
from
diabetes”
2)
Mee8ng
at
Amgen
Tour
of
California
• Shared
guide
to
communicate
about
diabetes
3)
Aner
Mee8ng
• “Javier
Megias
is
living
with
type
1
diabetes”
30. 2016 inspire Ÿ educate Ÿ empower30
PRO CYCLING
Team
Survey
Indicates
How
to
Communicate
about
Diabetes
For
People
with
Diabetes,
Parents
and
Partners
Someone
who
has
diabetes
is
a
_____.
“Person
with
diabetes”
37%
Doesn’t
maeer
33%
“Diabe2c”
29%
Diabetes
is
a
_____.
“Condi8on”
51%
“Disease”
32%
Doesn’t
maeer
17%
Those
who
don’t
have
diabetes
are
____.
“People
without
diabetes”
55%
Doesn’t
maeer
29%
“Normal”
or
“Healthy”
16%
I
need
to
_____
my
blood
sugar.
“Check”
65%
Doesn’t
maeer
19%
“Test”
16%
Source:
Team
Novo
Nordisk
Se/ng
the
Record
Straight
Survey.
310
respondents.
June
2016.
Diabetes
must
be
well
_____.
“Managed”
72%
“Controlled”
15%
Doesn’t
maeer
13%
31. 2016 inspire Ÿ educate Ÿ empower31
PRO CYCLING What
does
our
language
say
about
us?
32. 2016 inspire Ÿ educate Ÿ empower32
PRO CYCLING Diabetes
Australia
posi8on
statement
“Words
are,
of
course,
the
most
powerful
drug
used
by
mankind”
Rudyard
Kipling
PDF
of
Posi2on
Statement
Can
Be
Found
Here
33. 2016 inspire Ÿ educate Ÿ empower33
PRO CYCLING The
language
of
“adherence”
Assump8ons
L There
are
clear
instruc2ons
L Health
professionals
agree
on
what
is
needed
L Agreement
about
the
decisions
made
L Health
professionals
accurately
recall
what
they
tell
people
with
diabetes
Reality
• People
with
diabetes
– correctly
recall
a
mean
of
0.6
decisions
made
in
a
consulta2on
– recall
a
mean
of
1.7
decisions
in
a
consulta2on
not
found
on
the
recording!
• Health
professionals
– correctly
recalled
a
mean
of
0.8
decisions
per
consulta2on
– recall
a
mean
of
2.3
decisions
per
consulta2on
not
found
on
recording!
Skinner
TC
et
al
(2007)
Diabe<c
Medicine,
24,
557-‐560
34. 2016 inspire Ÿ educate Ÿ empower34
PRO CYCLING
• Talk
about
how
people
can
‘influence’
blood
glucose
levels
• Offer
hope
• Recognise
the
reality
of
diabetes
is
a
compromise
between:
– best
blood
glucose
possible
– no
severe
hypoglycaemia
– no
distress
– …
and
having
a
happy,
spontaneous,
independent
life
The
language
of
“control”
Assump8ons
L You
must
be
controlled
L Its
for
your
own
good
L You
are
your
numbers
– they
indicate
how
‘good’
you’ve
been
(or
not!)
L If
you
don’t
do
well
enough,
its
because…
– you
didn’t
have
enough
willpower
– you
are
‘non-‐compliant’
L You
can
never
do
enough
L Perpetuates
‘blame
/
shame’
dialogue
What
to
do
instead?
…
his
BG
control
is
…
…
he
is
poorly
controlled…
…
she
has
poor
blood
glucose
control
…
35. 2016 inspire Ÿ educate Ÿ empower35
PRO CYCLING
Aotudes
to
insulin
of
people
with
type
2
diabetes
reflect
this
language
0
10
20
30
40
50
60
Personal
failure
*
Unwilling
Willing
%
agreeing
with
statement
Polonsky
WH
et
al
(2005)
Diabetes
Care
28(10):
2543-‐2545
REALITY:
Type
2
diabetes
is
a
progressive
condi<on
and
eventually
almost
all
people
with
this
condi<on
will
require
insulin
Wong
J
(2004)
*PERCEPTION:
“insulin
would
mean
I
had
failed,
that
I
hadn’t
done
a
good
enough
job
taking
care
of
my
diabetes”
37. 2016 inspire Ÿ educate Ÿ empower37
PRO CYCLING Today’s
Panelists
• Renza
Scibilia
(AUS)
–
Diabetes
Australia
&
Diabetogenic
• Ben
Dilley
(USA)
–
TNN,
Former
Pro
Cyclist
• Thomas
Raeymaekers
(BEL)
–
TNN,
Former
Pro
Cyclist
• Lauren
Adams,
RD
CDE
(USA)
–
TNN,
Elite
Runner
38. 2016 inspire Ÿ educate Ÿ empower38
PRO CYCLING Ques8ons
1. What’s
the
most
ridiculous
thing
you’ve
heard
about
diabetes?
2. Tips
on
how
to
address
s2gmas?
– Do
you
have
any
prepared
responses?
3. Person
with
Diabetes
or
Diabe2c?