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Table 4 Preferences for data sharing and data concerns

From: Patients’ willingness to share digital health and non-health data for research: a cross-sectional study

Data Preferences

n (%)

Feedback Preferences:

If you donated your electronic data to health researchers, what type of feedback would you like to receive?

 Exercise and eating habits

130 (60%)

 Habits effect on health

137 (63%)

 Language analysis from social media

47 (22%)

 Comparison to other donors’ data

62 (29%)

 Potential risk factors

140 (65%)

 Other

30 (14%)

Result Sharing Preferences:

If you donated your electronic data to researchers, who would you want insights from your data to be shared with?

 Myself

155 (72%)

 Researchers

77 (36%)

 Health care provider

111 (51%)

 Social network

8 (4%)

 Family

89 (41%)

 Others with similar health conditions

58 (27%)

General Privacy Preferences:

I am generally a private person in my everyday life.

 Agree

175 (85%)

 Disagree

22 (11%)

 Unsure

9 (4%)

I tend to reveal minimal personal information about myself online due to privacy concerns.

 Agree

157 (76%)

 Disagree

33 (16%)

 Unsure

16 (8%)

I feel uncomfortable when other people have access to my personal information.

 Agree

157 (76%)

 Disagree

27 (13%)

 Unsure

22 (11%)

I believe that there is no need to be concerned about revealing personal information online.

 Agree

44 (21%)

 Disagree

149 (72%)

 Unsure

13 (6%)

It does not bother me that a history of my online activities may be available to 3rd parties online.

 Agree

41 (20%)

 Disagree

146 (71%)

 Unsure

19 (9%)

I regularly use anti-virus/phishing/spamming software, or clear my browser history/cookies/cache.

 Agree

102 (50%)

 Disagree

78 (38%)

 Unsure

26 (13%)

Digital Data Concerns (Yes vs. No):

Information I share with friends online may be inappropriately disclosed by them to others.

 Yes

115 (56%)

 No

66 (32%)

 Unsure

25 (12%)

People who you only know from online are not who they say they are.

 Yes

109 (53%)

 No

54 (26%)

 Unsure

43 (21%)

Other internet users might try to defraud you or abuse your personal information.

 Yes

150 (73%)

 No

31 (15%)

 Unsure

25 (12%)

Online companies and websites might try and share your information to other parties without explicit consent.

 Yes

153 (74%)

 No

34 (17%)

 Unsure

19 (9%)

Online companies and websites might use your information for purposes not explicitly stated in the privacy policy.

 Yes

149 (72%)

 No

34 (17%)

 Unsure

23 (11%)