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, 2017 Lansing, Michigan 

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

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!

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)

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

What does the public think?

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 https://vimeo.com/95455683 Participants shown a short video about how health information is shared

Information sharing is not a slam dunk

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

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

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]

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%

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%

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)

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)

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)

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)

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 

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 

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 

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 

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 

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.

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.

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.

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.

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.

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.

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.

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.

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!)

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

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