1. Information networks: Is the public ready?
Jodyn Platt, MPH, PhD
Department of Learning Health Sciences
University of Michigan Medical School
Connecting Michigan for Health
June 7-8, Lansing, Michigan 

2. Overview Motivation: Trends and environment
Current research: What does the public think?
Spoiler alert: Skepticism of networked health information; it’s addressable!
Implications for policy and practice
Limitations and implications for future work

3. Let’s share: data information knowledge  
Quantity of data: [insert statistics] PCORNet, Precision Medicine, HIE
Types of data: genomic, physiologic, diagnostic, treatment, research, and mobile health, public health
Interoperability of data: Getting better!

4. Trend: High demand from researchers, payors, providers, industry to connect and share
21st Century Cures Act ($6.3billion; HIE policy, and more!)
Precision Medicine Initiative ($215million; n=1,000,000+)
State Innovation Models ($660million; Round 2)
Real World Evidence ($Billion cost savings)

5. Ethical demand?
Health information sharing is requirement of well-implemented LHS Necessitating a shift in current ethical frameworks and moral obligations of all stakeholders Proposal: Patients have an obligation to participate
Faden RR, Kass NE, Goodman SN, Pronovost P, Tunis S, Beauchamp TL. An ethics framework for a learning health care system: a departure from traditional research ethics and clinical ethics. Hastings Center Report 2013;43(s1):S16-S27

6. What does the public think?

7. Methods Online survey, 119 items (~20 minutes)
Fielded by the GfK Group; Nov 2016
Probability, address-based sampling
Representative of the U.S. population
Response rate = 64.7%
N=1,014
Participants shown a short video about how health information is shared

8. Information sharing is not a slam dunk

9. Comfort with information sharing
 I am comfortable having my electronic health information being part of a network that includes:
Not at all true (%)
Somewhat true (%)
Fairly true (%)
Very true (%)
Other health care providers involved in my care
13.5
32.5
28.0
26.0
Research networks
29.9
39.6
20.1
10.5
Quality improvement networks
30.3
38.7
19.6
11.5
Mental health services
39.0
33.6
18.9
8.5
All health care providers in my state
39.7
35.8
15.5
9.0
Social service agencies
47.8
32.1
12.7
7.4

10. Comfort with information sharing
 I am comfortable having my electronic health information being part of a network that includes:
Not at all true (%)
Somewhat true (%)
Fairly true (%)
Very true (%)
Other health care providers involved in my care
13.5
32.5
28.0
26.0
Research networks
29.9
39.6
20.1
10.5
Quality improvement networks
30.3
38.7
19.6
11.5
Mental health services
39.0
33.6
18.9
8.5
All health care providers in my state
39.7
35.8
15.5
9.0
Social service agencies
47.8
32.1
12.7
7.4

11. Next question
What factors predict increased comfort with being part of a large information sharing network?
Demographics
Beliefs about insurance
Beliefs about the health system
Beliefs about policy and governance
Y = Σ [comfort with data sharing]

12. Demographics Sex 49.8% Female 50.2% Male Race 76.7%
Female
49.8%
Male
50.2%
Race
White, not Hispanic
76.7%
Not- white, non-Hispanic
23.4%
Age (years)
53 (17.2)
Education
High school or less
33.7%
Some college
27.5%
BA or higher
38.8%

13. Beliefs about insurance
My health insurer could use my private health information against me
28.1%
My insurer could share personal information about me with people who have no business knowing it
33.7%
I am worried about not being able to pay medical bills
25.1%
I am confident my health insurance covers my medical needs
49.8%

14. Beliefs about the health system
People have an obligation to participate in research
21.3%
Privacy Index (Scale: 1-4; 1= low privacy concerns; 4 = high privacy concerns)
1.9 (0.8)
Belief in medical deception Index (Scale: 1-4; 1= low concerns about deception; 4 = high)
1.8 (0.7)
Trust in health care provider Index (Scale 1-4; 1 = low trust; 4 = high trust)
2.8 (0.6)
Trust in health system Index (Scale: 4-16; 4 = low trust; 16 = high trust)
10.8 (2.1)

15. Beliefs about the health system
People have an obligation to participate in research
21.3%
Concerns about privacy Index (Scale: 1-4; 1= low concerns; 4 = high concerns)
1.9 (0.8)
Belief in medical deception Index (Scale: 1-4; 1= low concerns about deception; 4 = high)
1.8 (0.7)
Trust in health care provider Index (Scale 1-4; 1 = low trust; 4 = high trust)
2.8 (0.6)
Trust in health system Index (Scale: 4-16; 4 = low trust; 16 = high trust)
10.8 (2.1)

16. Beliefs about the health system
People have an obligation to participate in research
21.3%
Concerns about privacy Index (Scale: 1-4; 1= low concerns; 4 = high concerns)
1.9 (0.8)
Belief in medical deception Index (Scale: 1-4; 1= low concerns about deception; 4 = high)
1.8 (0.7)
Trust in health care provider Index (Scale 1-4; 1 = low trust; 4 = high trust)
2.8 (0.6)
Trust in health system Index (Scale: 4-16; 4 = low trust; 16 = high trust)
10.8 (2.1)

17. Beliefs about the health system
People have an obligation to participate in research
21.3%
Privacy Index (Scale: 1-4; 1= low privacy concerns; 4 = high privacy concerns)
1.9 (0.8)
Belief in medical deception Index (Scale: 1-4; 1= low concerns about deception; 4 = high)
1.8 (0.7)
Trust in health care provider Index (Scale 1-4; 1 = low trust; 4 = high trust)
2.8 (0.6)
Trust in health system Index (Scale: 4-16; 4 = low trust; 16 = high trust)
10.8 (2.1)

18. Beliefs about governance and policy
Not at all true (%)
Somewhat true(%)
Fairly true(%)
Very true (%)
Access to electronic health information is adequately regulated
21.27
47.29
24.21
7.24
Electronic health information is sufficiently protected by current law and regulation
21.95
42.19
27.26
8.6
I am confident in the standards for keeping personal health information confidential
17.42
40.61
30.32
11.65
Health researchers are sufficiently accountable for conducting ethical research
14.37
41.06
30.77
13.8
Physicians are sufficiently accountable for conducting ethical research
12.1
39.93
33.03
14.93
Access to electronic health information should be based on levels of security
9.5
28.17
31.56
I would like to be notified if my health information is shared in a network
26.36
I would like to give permission for my health information to be shared in a network
25.79
26.24
26.7 

19. Beliefs about governance and policy
Not at all true (%)
Somewhat true(%)
Fairly true(%)
Very true (%)
Access to electronic health information is adequately regulated
21.27
47.29
24.21
7.24
Electronic health information is sufficiently protected by current law and regulation
21.95
42.19
27.26
8.6
I am confident in the standards for keeping personal health information confidential
17.42
40.61
30.32
11.65
Health researchers are sufficiently accountable for conducting ethical research
14.37
41.06
30.77
13.8
Physicians are sufficiently accountable for conducting ethical research
12.1
39.93
33.03
14.93
Access to electronic health information should be based on levels of security
9.5
28.17
31.56
I would like to be notified if my health information is shared in a network
26.36
I would like to give permission for my health information to be shared in a network
25.79
26.24
26.7 

20. Beliefs about governance and policy
Not at all true (%)
Somewhat true(%)
Fairly true(%)
Very true (%)
Access to electronic health information is adequately regulated
21.27
47.29
24.21
7.24
Electronic health information is sufficiently protected by current law and regulation
21.95
42.19
27.26
8.6
I am confident in the standards for keeping personal health information confidential
17.42
40.61
30.32
11.65
Health researchers are sufficiently accountable for conducting ethical research
14.37
41.06
30.77
13.8
Physicians are sufficiently accountable for conducting ethical research
12.1
39.93
33.03
14.93
Access to electronic health information should be based on levels of security
9.5
28.17
31.56
I would like to be notified if my health information is shared in a network
26.36
I would like to give permission for my health information to be shared in a network
25.79
26.24
26.7 

21. Beliefs about governance and policy
Not at all true (%)
Somewhat true(%)
Fairly true(%)
Very true (%)
Access to electronic health information is adequately regulated
21.27
47.29
24.21
7.24
Electronic health information is sufficiently protected by current law and regulation
21.95
42.19
27.26
8.6
I am confident in the standards for keeping personal health information confidential
17.42
40.61
30.32
11.65
Health researchers are sufficiently accountable for conducting ethical research
14.37
41.06
30.77
13.8
Physicians are sufficiently accountable for conducting ethical research
12.1
39.93
33.03
14.93
Access to electronic health information should be based on levels of security
9.5
28.17
31.56
I would like to be notified if my health information is shared in a network
26.36
I would like to give permission for my health information to be shared in a network
25.79
26.24
26.7 

22. Beliefs about governance and policy
Not at all true (%)
Somewhat true(%)
Fairly true(%)
Very true (%)
Access to electronic health information is adequately regulated
21.27
47.29
24.21
7.24
Electronic health information is sufficiently protected by current law and regulation
21.95
42.19
27.26
8.6
I am confident in the standards for keeping personal health information confidential
17.42
40.61
30.32
11.65
Health researchers are sufficiently accountable for conducting ethical research
14.37
41.06
30.77
13.8
Physicians are sufficiently accountable for conducting ethical research
12.1
39.93
33.03
14.93
Access to electronic health information should be based on levels of security
9.5
28.17
31.56
I would like to be notified if my health information is shared in a network
26.36
I would like to give permission for my health information to be shared in a network
25.79
26.24
26.7 

23. Factors associated with greater comfort with information networks1
People have an obligation to participate in research (b* = 0.22; p<0.001)
Education (Ref = College or greater)
High school or less (b*=-0.11; 0.003)
Some college (b*=0.12, p=0.707)
Go beyond “people like me”
Demonstrate
and
communicate governance
BUILD
TRUST
FAIR/fair – use electronic communication
1Weighted OLS stepwise regression w/ Bonferroni correction; inclusion p=0.05/k, exclusion p=0.05; b*= Standardized beta coefficient.

24. Factors associated with greater comfort with information networks1
Access to electronic health information is adequately regulated
(b*= 0.22; p<0.001)
Health researchers are sufficiently accountable for conducting ethical research (b*=0.19; p<0.001)
My health insurer could use my private health information against me
(b* = -0.12, p=0.001)
Concerns about privacy
(b*=-0.11; p=0.008)
People have an obligation to participate in research (b* = 0.22; p<0.001)
Education (Ref = College or greater)
High school or less (b*=-0.11; 0.003)
Some college (b*=0.12, p=0.707)
Go beyond “people like me”
Demonstrate
and
communicate governance
BUILD
TRUST
FAIR/fair – use electronic communication
1Weighted OLS stepwise regression w/ Bonferroni correction; inclusion p=0.05/k, exclusion p=0.05; b*= Standardized beta coefficient.

25. Factors associated with greater comfort with information networks1
Access to electronic health information is adequately regulated
(b*= 0.22; p<0.001)
Health researchers are sufficiently accountable for conducting ethical research (b*=0.19; p<0.001)
My health insurer could use my private health information against me
(b* = -0.12, p=0.001)
Concerns about privacy
(b*=-0.11; p=0.008)
People have an obligation to participate in research (b* = 0.22; p<0.001)
Education (Ref = College or greater)
High school or less (b*=-0.11; 0.003)
Some college (b*=0.12, p=0.707)
Go beyond “people like me”
I would like to give permission for my health information to be shared in a network
(b*=0.12; p=0.001)
I would like to be notified if my health information is shared in a network (b*=-0.07; p=0.37)
Demonstrate
and
communicate governance
BUILD
TRUST
FAIR/fair – use electronic communication
1Weighted OLS stepwise regression w/ Bonferroni correction; inclusion p=0.05/k, exclusion p=0.05; b*= Standardized beta coefficient.

26. Factors associated with greater comfort with information networks1
Access to electronic health information is adequately regulated
(b*= 0.22; p<0.001)
Health researchers are sufficiently accountable for conducting ethical research (b*=0.19; p<0.001)
My health insurer could use my private health information against me
(b* = -0.12, p=0.001)
Concerns about privacy
(b*=-0.11; p=0.008)
People have an obligation to participate in research (b* = 0.22; p<0.001)
Education (Ref = College or greater)
High school or less (b*=-0.11; 0.003)
Some college (b*=0.12, p=0.707)
Go beyond “people like me”
I would like to give permission for my health information to be shared in a network
(b*=0.12; p=0.001)
I would like to be notified if my health information is shared in a network (b*=-0.07; p=0.37)
Demonstrate
and
communicate governance
BUILD
TRUST
FAIR/fair – use electronic communication
Trust in the health system (b* 0.22, p=<0.001)
1Weighted OLS stepwise regression w/ Bonferroni correction; inclusion p=0.05/k, exclusion p=0.05; b*= Standardized beta coefficient.

27. Recommendations for policy and practice
People have an obligation to participate in research (b* = 0.22; p<0.001)
Education (Ref = College or greater)
High school or less (b*=-0.11; 0.003)
Some college (b*=0.12, p=0.707)
Go beyond “people like me”
Demonstrate
and
communicate governance
BUILD
TRUST
FAIR/fair – use electronic communication
1Weighted OLS stepwise regression w/ Bonferroni correction; inclusion p=0.05/k, exclusion p=0.05; b*= Standardized beta coefficient.

28. Recommendations for policy and practice
Access to electronic health information is adequately regulated (b*= 0.22; p<0.001)
Health researchers are sufficiently accountable for conducting ethical research (b*=0.19; p<0.001)
My health insurer could use my private health information against me (b* = 0.-12, p=0.001)
Concerns about privacy (b*=0-.11; p=0.008)
Go beyond “people like me”
Demonstrate
and
communicate governance
BUILD
TRUST
FAIR/fair – use electronic communication
1Weighted OLS stepwise regression w/ Bonferroni correction; inclusion p=0.05/k, exclusion p=0.05; b*= Standardized beta coefficient.

29. Recommendations for policy and practice
Go beyond “people like me”
I would like to give permission for my health information to be shared in a network
(b*=0.12; p=0.001)
I would like to be notified if my health information is shared in a network (b*=-0.07; p=0.37)
Demonstrate
and
communicate governance
BUILD
TRUST
FAIR/fair – use electronic communication
1Weighted OLS stepwise regression w/ Bonferroni correction; inclusion p=0.05/k, exclusion p=0.05; b*= Standardized beta coefficient.

30. Recommendations for policy and practice
Go beyond “people like me”
Demonstrate
and
communicate governance
BUILD
TRUST
FAIR/fair – use electronic communication
Trust in the health system (b* 0.22, p=<0.001)
1Weighted OLS stepwise regression w/ Bonferroni correction; inclusion p=0.05/k, exclusion p=0.05; b*= Standardized beta coefficient.

31. Limitations and future research
Focus on information sharing: What about knowledge sharing and avatars?
Monitor consequences: Data withholding? (Blumenthal, 2017)
Qualitative work would help interpretation (Coming soon!)

32. To be continued…
November 15-16, 2017 symposium and workshop: Ethical, Legal, and Social Implications of Learning Health Systems: Data and Knowledge Sharing

33. Acknowledgements University of Michigan School of Public Health
Sharon Kardia, PhD
Tevah Platt, MA
Department of Learning Health Sciences
M. Grace Trinidad, MA, MPH