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