big desire to share big health data: a shift in consumer attitudes toward personal health...
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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
“Given the choice between pizza and privacy…a remarkable number will opt for the pizza.”
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
Genomera: Health collaboration
Traitwise: Survey platform
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?
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
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%.
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%)
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
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
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...
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...
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…
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...
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...
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...
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...
Limitations?
1. Internet connectivity2. Convenience sample (n=128)3. Education level
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…
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
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...
• In the “No” category, 63% of respondents reported having less than 4 year degree.
Education seems to play a strong role…
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.
Health Information Sharing Model
Trust
Motivation
Community
Informe
d Consen
tConsumer
Final thought…
“Wouldn’t it be amazing to have anonymous medical records available to all research doctors?” – Larry Page
Image credit: Daniel Kraft
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.
28
Questions?K. Thomas Pickardktpickard [at] startcodon.org@kthomaspickardwww.linkedin.com/in/kthomaspickard
Disclosure statement: Nothing to disclose
Paper: http://bit.ly/share-big-health-data-paperSurvey: http://bit.ly/sharing-health-info-survey-form
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