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The Impact of Health Disclosure Laws on Health Information Exchanges WEIS 2011. Idris Adjerid Alessandro Acquisti Rema Padman Rahul Telang Julia Adler-Milstein. Introduction & Motivation.
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The Impact of Health Disclosure Laws on Health Information ExchangesWEIS 2011 Idris Adjerid Alessandro Acquisti RemaPadman RahulTelang Julia Adler-Milstein
Introduction & Motivation • HIE - A project or initiative focused around electronic health data exchange between two or more disparate organizations or stakeholders • Increased digitization and sharing of patient health records raise privacy concerns • Evidence suggests that privacy concerns have been and continue to be a significant concern for HIEs: • Consistently ranks first or second in terms of HIE concerns on the annual eHealth Initiative Survey • In 2010, ACLU brought suit against the Rhode Island HIE on privacy grounds
Research Objective • Evaluate the impact of health disclosure laws on the emergence and success of Health Information Exchanges • Two alternative hypotheses: • Laws limiting disclosure of health information negatively affect HIE growth and success. • Stronger privacy protections may increase the cost of technology adoption and risks involved in health information sharing • Limiting disclosure of health information positively affects HIE growth and success • Stronger assurances to patient groups, privacy advocacy groups, and regulatory bodies resulting in increased cooperation and participation
HIE Dynamics • Common HIE models • Regional health leaders form independent initiatives to facilitate health information sharing • Subscription/Transaction based models • Treated as Public Good • Relatively Homogeneous in Organization Types • 85/88 Operational HIEs are independent non-profits or function under a non-profits • Incentives for HIE Adoption • Efficiency gains for payers and insurers • Quality and Competitive gains for providers • Federal Incentives (HITECH) • State Incentives
HIE Formation - Overview • Administrative Framework • Payment, Funding, TOU Agreements • Technological Infrastructure • Community Outreach & Support Pharmacy Clinic Group Practice Home Health Insurer Health Information Exchange Hospitals Long term Care Lab Urgent Care
HIE Data – Definition & Sources • Publicly available data from the E-Health Initiative Survey on Health Information Exchanges • Includes a list of Health Information Exchanges by state from year to year, and other metrics • We use data from 2004 to 2009 • We validated and augmented this list through online research and communications with HIE representatives • HIE Survey Data from 2007, 2008, and 2009 (Adler-Milstein et al 2009)
Health Privacy Disclosure Laws • Consent and Disclosure of Health Information governed by: • Federal Laws • Health Insurance Portability and Accountability Act (HIPAA) • Health Information Technology for Economic and Clinical Health Act (HITECH) • State Statutes: • General Health Disclosure Legislation (Not HIE specific, Prior to Data) • HIE-Specific Legislation • Combination of state HIE and General Health Disclosure Laws define between-state variation in disclosure requirements State Health Disclosure Laws State HIE Laws: Privacy and Others HITECH Act February 2009 1996 - HIPAA Enacted 2009 2004 State Health Disclosure Laws HIE Data
Legal Data – State HIE Laws • HIE Laws - Legislation pertaining to HIEs and generally involve spurring or encouraging HIE activities in a state • Passed in More Recent Years • Interesting Variation for Disclosure Requirements • We categorized states into one of five groups: • ProHIE and No Consent (11 states) • “Evaluate Any changes in State laws that are necessary to protect the privacy and security…” (Md. Code Ann., § 19-143 ) • ProHIE and Consent (7 states) • “Patients and health care providers shall have the choice to participate in the HIE…” (R.I. Gen. Laws § 5-37.7-4 ) • ProHIEOnly (3 states and D.C.) • Privacy Only (3 states) • No HIE Law (26 states)
Analysis - Overview • Cross-Sectional Analysis • Summary Statistics • Econometric Model • Results • Panel Analysis • Econometric Model • Results
Cross-Sectional Analysis • Motivation for Cross-Sectional Analysis • Evaluate HIE Outcomes of Interest • Explore the relationship between HIE outcomes and Health Disclosure Laws • Cross-Sectional Data as of the end of 2009 • Covariate of Interest: General Health Disclosure Legislation • Passed prior to the prevalence of HIE efforts • Control for subsequent HIE legislation • Endogeneity concerns
Cross-Sectional Analysis – Key Measures • We identified five key indicators of HIE activity in any given state
Cross-Sectional Analysis – Econometric Model • Because other factors may affect the development of HIEs in a state, we performed additional analysis to better model this correlation with our various dependent variables TotalHIEstate= 0 + 1*DisclosureLaw+ 2*Population + 3*PopulationSquared+ 4*BroadbandAccess + 5* DemocraticState+ 6*PerCapitaGDP+i*HIELaw+ • Estimate Via Poisson Regression • Our data is best categorized as count data which are highly non-normal and poorly estimated by OLS
Results – Operational and Failure Rates • We find a consistent Positive Association between Health disclosure Laws • Correlation does not fade with the inclusion of various state controls • Other considered covariates were measures of GDP (Health & Computer), measures of legislative professionalism, and state education levels
Panel Analysis - Motivation • Our Cross-sectional model can only provide some evidence of correlation between health disclosure laws and HIE activity, but we cannot make any claim about causation • IV approach may mediate some of these concerns, but IV’s from previous literature raise concerns (IV Analysis in Appendix of presentation) • Panel-Analysis allows us to at least address fixed-effects and controls for other factors • Covariate of Analysis: HIE Laws vary in the time period with differing privacy protections • Captures health disclosure laws as fixed effects (passed prior to our dataset)
Panel Analysis – Econometric Model • Two Dependent Variables (Semi-Annual 2004-2009) • Operational HIEs • Total HIEs – Does not include failed HIEs (successful entrants) • Fixed Effects Regression used to estimate basic model for evaluating the effect of various HIE Laws TotalHIEst& Operational HIEst= o + i*HIELawst+i* HIELawst*HealthDisclosureLawss+ 1*Fundingst+2*StateDesignatedHIEst+3*Populationst+4*PopulationSquaredst +5*PerCapitaGDPst +θs +λt+st • Control for other aspects of law that may be encouraging HIE growth • Funding • State Designated Entity • State Scale Effects • θsState Fixed Effects and λtTime Fixed Effects
Panel Analysis – Results • Robust to Inclusion of Various Other Measures: • HIT Adoption Measures • EMR Adoption • CPOE adoption • Healthcare Characteristics State Measures • Managed Care Penetration • Over65 • No Significant Difference in HIEs between conditions • Breadth of Sharing (Results, Inpatient, Outpatient) • Amount of Patients Covered • Percent of Hospital Beds covered in region • Independent vs. Subsidiary Organization
Summary of Results • So How do Privacy Protections Impact HIE Progress? • It Depends: • Find that of all HIE promoting initiatives, only those that include strong privacy considerations (consent) encourage growth and success • This effect is driven strongly by the states that also have pre-existing health disclosure legislation • Find that privacy protections without incentives has a strong detrimental effect on HIE growth and success • However, effect based on a small number of states (3)
Limitations • Data limitations • Although a comprehensive dataset, still a small dataset • Measurement of some outcomes difficult, such as failed HIEs • Effects based on sometimes small number of “policy interventions” across states • Analytical limitation common to other studies examining cross-state differences
Appendix: HIE and Consent • Patient consent has been a central concern with respect to privacy and HIEs • Opt In, Opt Out, No Consent • Federal and State Laws don’t provide requirements for consent for many HIE contexts • Covered Entities under HIPAA are not required to solicit consent prior to disclosure of health information for treatment purposes • State Health Disclosure Laws generally echo these requirements with few states going beyond HIPAA requirements • However, state laws do provide additional enforcement power • HIE Laws may apply more broadly than general health disclosure laws (beyond providers and payers) and also may provide requirements beyond current state statutes
Appendix: Endogenous Passing of HIE Laws Trend of Operational HIEs relative to HIE Laws • Prior to the passage of these laws (2004-2006), there are small differences between the states • A growing difference between states with and without HIE laws (Not Significant)
Appendix: Endogenous Passing of HIE Laws Trend of Operational HIEs relative to Specific HIE Law Type • HIE promoting legislation with weak privacy protections seem to have initially more activity but maintain trajectory • HIE promoting and strong privacy projections seem to display a sharp increase in HIE activity around the passage of these laws • Little growth for states with HIE only and Privacy Only legislation
Appendix: Potential Causes • Given that health data privacy sensitivities exist even in states with weaker legislative protections, state with more prescriptive legislation dealing with privacy may result in a less ambiguous operating environment for HIEs • Restrictive legislative environments force the “privacy issue” resulting in HIEs that are foresighted in terms of handling privacy concerns, engaging the local community, and developing mitigating technologies and policies • Privacy protections without accompanying incentives may inhibit HIE entry and success due to fears of overly restrictive regimes (all stick and no carrot)
Legal Data - Health Disclosure Laws • State Health Disclosure Law: • Laws that (at a minimum) limit the disclosure of patient health information (through consent requirements) by physicians, hospitals, health management organizations, and insurers • Didn’t include laws that restrict only specific types of data (HIV, Mental Health, etc.) or narrowly applicable • Resources • The State of Health Privacy: A Survey of State Health Privacy Statutes, Georgetown University, Washington, DC, 2002 • Compilation of State Privacy Laws by the Privacy Journal, Updated 2010 • Various state legislative references • In our data we find 21 states with health disclosure laws and 29 (and D.C.) without