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Big Desire to Share Big Health Data: A Shift in Consumer Attitudes toward
Personal Health Information
K. Thomas Pickard and Melanie Swan2014 AAAI Spring Symposium Series
Stanford UniversityMarch 26, 2014
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“Given the choice between pizza and privacy…a remarkable number will opt for the pizza.”
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What did we do?
• Online survey to gauge consumer attitudes toward sharing health information
• Period: July 30, 2012 to April 30, 2013• 128 respondents and >7,900 data points• 27 questions
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Genomera: Health collaboration
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Traitwise: Survey platform
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Why did we do this?
• Learn more about healthcare research• Answer some questions:
1. Are consumers willing to share genomic, medical and health tracking information for research purposes?
2. Do consumers have interest in receiving recommendations based on shared personal health information?
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Willing to share…
• 95% responded “Yes” or “In some cases.”
0
10
20
30
40
50
60
70 In some cases
Yes
No
I am willing to share my health and medical information...
Perc
ent
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What would I share?• Diet (88%)• Exercise (88%)• Traits (85%)• Diseases and conditions (81%)• Genomic data (80%)• Fitness tracking information
(80%)• Medications (79%)• Environmental factors (78%)• Electronic medical records
(72%)• Other (27%)
Exerc
ise
Disease
s and co
nditions
Fitness
track
ing inform
ation (F
itbit,
wireles
s scal
e, etc
.)
Envir
onmental
facto
rsOther
0%10%20%30%40%50%60%70%80%90%
100%
Under the right circumstances, I would be will-ing to share the following health and medical in-
formation...
Average
The average across all data types was 76%.
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Our sample was WIRED
• 64% of respondents reported owning one or more tracking devices.
0 device
s
1 device
2 device
s
3 device
s
4 device
s
5 device
s0%
5%
10%
15%
20%
25%
30%
35%
40%
0%
10%
20%
30%
40%
50%
60%
70%
Number of Tracking Devices
Pct respondents with one or more tracking devices (64%)
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Would I share irreversibly anonymized data?
• 71% are willing to share irreversibly anonymized information.
0
10
20
30
40
50
60
70
80Yes
In some cases
No
I am willing to let researchers use my information if it is ir-
reversibly anonymized...
Perc
ent
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Would I share identified data?
• 68% would share fully identified information in some cases.
0
10
20
30
40
50
60
70
80
In some cases
No
Yes
I would share my health and medical information even if it
were not anonymized...
Perc
ent
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I want to know…• Actionable things I can do to
improve my health (93%)• My likelihood to develop a
disease (86%)• What others like me are doing
to stay healthy (82%)• My current state of health
(81%)• My health relative to peers or
others (71%)• How my health may affect my
children (62%)• Other (17%) Acti
onable
things I ca
n do to im
prove
my h
ealth
My like
lihood to
develo
p a dise
ase
What
others lik
e me a
re doing t
o stay
health
y
My curre
nt stat
e of h
ealth
My hea
lth re
lative
to pee
rs or o
thers
How my h
ealth
my a
ffect m
y child
renOther
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Based on the information I share, I would like to know...
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What’s my motivation?
• Make new health discoveries (88%)
• Learn more about personal health risks (82%)
• Desire to change current system (73%)
• Health condition (66%)• Learn more about my
ancestry (31%)• Want something in return
(15%)• Bragging rights (11%)
Make n
ew hea
lth disc
overie
s
Learn
more
about p
ersonal
health
risks
Desire
to chan
ge cu
rrent s
ystem
Health
condition
Learn
more
about m
y ances
try
Wan
t someth
ing in re
turn
Braggin
g righ
ts0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
I am motivated to share my health in-formation for the following reasons...
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Who should control access?
• Myself (69%)• Non-profit organizations
(45%)• Universities and academic
institutions (38%)• National databanks (34%)• Government (25%)• For-profit companies (6%)• Insurance companies (3%)
Myself
Non-profit o
rganiza
tions
Universi
ties an
d acad
emic i
nstitutions
National
databan
ks
Govern
ment
For-p
rofit c
ompanies
Insuran
ce co
mpanies
0%
10%
20%
30%
40%
50%
60%
70%
80%
For research purposes, I believe that access to anonymized medical data should be controlled
by…
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What are the barriers to sharing?
• Privacy concerns (85%)• Lack of awareness of
value of contribution (77%)
• Concern about data being used for profit (58%)
• No easy way to share data (45%)
• Other (13%)
Privacy
concer
ns
Lack o
f aware
ness of v
alue o
f data
contri
bution
Concern ab
out data
being u
sed fo
r pro
fit
No easy
way to
share
dataOther
0%10%20%30%40%50%60%70%80%90%
I believe the barriers that prevent people from sharing genomic and medical data
for research are...
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What am I concerned about?
• Insurance discrimination (67%)
• Personal or family privacy (43%)
• Employment discrimination (40%)
• Racial discrimination (11%)
• Other (20%)Insu
rance
discrim
ination
Personal
or fam
ily priv
acy
Employm
ent d
iscrim
ination
Racial
discrim
ination
Other0%
10%
20%
30%
40%
50%
60%
70%
80%
My concern with sharing my genomic data is...
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Give data. Get feedback…
• Respondents are more likely to share if they receive personalized recommendations based on discoveries made from their data.
Less likely More likely
I would be more likely to share my health and medical information if I received personalized recommendations based on discoveries made
from my data...
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And I would pay for it…
• Non-profit organization with recommendations based on scientifically validated algorithms (63%)
• Physician or healthcare provider (59%)
• Genetic counselor (52%)• For-profit company with
recommendations based on scientifically validated algorithms (40%)
0%10%20%30%40%50%60%70%
After uploading my health and medical in-formation, I would pay one of the follow-
ing to review my data and provide rec-ommendations...
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Limitations?
1. Internet connectivity2. Convenience sample (n=128)3. Education level
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Our sample was educated
Sample: 59% of respondents have Master’s level education or higher.
US average: 10% have Master’s level education or higher.
0%5%
10%15%20%25%30%35%
The highest degree or level of school I have completed is…
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Can I replicate the results?• Order details:• Responses: 101/101• Ordered: February 23 2014• Completed: February 23 2014• Price: $205.00• • Target Market:• Country: United States• Language: English• Gender: Males and Females• Age Range: 18 - 65+ years old• Ethnicity/Race: Any• HH Income: $0 to $500k+• Education: Any• Employment: Any• Career: Any• Relationship: Any• Parental status: Any• Location: Any
20% had Master’s level education or higher
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Similar results
A1 A2 A30
10
20
30
40
50
60Answer Resp. (101)
A1: Yes 40.5% (41)
A2: No 10.8% (11)
A3: In some cases 48.5% (49)
I am willing to share my health and medical information...
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• In the “No” category, 63% of respondents reported having less than 4 year degree.
Education seems to play a strong role…
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Conclusions
1. Consumers are willing to share health data under the right conditions.
2. Education seems to play a strong role.3. Consumers want to be connected to their
data.4. Develop models to encourage sharing.
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Health Information Sharing Model
Trust
Motivation
Community
Informe
d Consen
tConsumer
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Final thought…
“Wouldn’t it be amazing to have anonymous medical records available to all research doctors?” – Larry Page
Image credit: Daniel Kraft
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Acknowledgements
• Greg Biggers – Genomera• Rechelle Fryklund and Michael
Simpson – Traitwise• Takashi Kido – Riken Genesis Co.,
Ltd., Japan
• We also would like to acknowledge and thank the survey respondents for their participation.
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28
Questions?K. Thomas Pickardktpickard [at] [email protected]/in/kthomaspickard
Disclosure statement: Nothing to disclose
Paper: http://bit.ly/share-big-health-data-paperSurvey: http://bit.ly/sharing-health-info-survey-form