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Breaking the gridl ck Breaking the gridlock HEALTH I. T. and PRIVACY Breaking the gridl ck Breaking the gridlock HEALTH I. T. and PRIVACY

HEALTH I. T. Divided We Fail Partners. . . want to break the gridlock! HEALTH I. T. Divided We Fail Partners. . . want to break the gridlock! • Privacy crucial for patients to have confidence in HIT • HIT must have privacy rules consumers can trust • But inefficient, low-quality, out-of-reach-costly care is as harmful as privacy threats • Paper records have always had privacy concerns • Privacy should no longer derail HIT ----- we should not have to choose between privacy and HIT

HEALTH I. T. History of Privacy Gridlock in Congress • 1979 Early effort to HEALTH I. T. History of Privacy Gridlock in Congress • 1979 Early effort to pass health privacy legislation • 1996 Congress still couldn’t agree, so HIPAA was punted to 1999 • 1999 deadline still could not be met, so HHS got job • 2006 Congress failed to conference HIT bills

HEALTH I. T. Privacy/Security Is a Concern for Public • 2007 IOM/Harris Interactive Survey: HEALTH I. T. Privacy/Security Is a Concern for Public • 2007 IOM/Harris Interactive Survey: 58% believe health privacy not sufficiently protected by federal/state laws or provider practices • 2005 California Health. Care Foundation: 67% concerned about medical records privacy • 1 in 8 avoid care, ask MD to fudge diagnosis, not submit claim, or avoid tests due to privacy concerns • Press reports on string of major breaches further erode public trust

HEALTH I. T. Key Building Block to Better Care HIT holds enormous potential to: HEALTH I. T. Key Building Block to Better Care HIT holds enormous potential to: 1. Improve quality & efficiency, save lives, money 2. Provide instant, comprehensive medical records 3. Engage consumers in managing their own health 4. Allow caregivers and providers to coordinate care 5. Help identify most effective care

HEALTH I. T. Can Enhance Aspects of Privacy • Easier (than paper) to track HEALTH I. T. Can Enhance Aspects of Privacy • Easier (than paper) to track who has seen/changed records for audit trails • Patients gain ability to review/comment on records they now rarely see • Technically feasible to limit who has access, even to subsets of records: Mental health, HIV, reproductive health, other sensitive data

HEALTH I. T. Can Resolve Other Privacy Issues (If Done Well) • Must address HEALTH I. T. Can Resolve Other Privacy Issues (If Done Well) • Must address potential for breaches, data-mining, misuse of sensitive personal data, which could undermine consumer confidence vital to HIT success • If protections are seen as inadequate, to avoid embarrassment or discrimination patients may withhold information and forego treatment • Critical to do privacy and security well: • to gain consumer confidence • preserve medical ethics

HEALTH I. T. Need to Balance Privacy Concerns and “Common Good” • Consumers do HEALTH I. T. Need to Balance Privacy Concerns and “Common Good” • Consumers do want benefits, convenience of electronic records • Aggregated, de-identified data have enormous power to identify public health threats and most effective care (“best practices”) • 1/14/07 JAMA study saw harmful impact on research from overly stringent privacy rules

HEALTH I. T. Legislation Status: Delay due to Privacy Issues • Wired for Health HEALTH I. T. Legislation Status: Delay due to Privacy Issues • Wired for Health Care Quality Act unanimously passed HELP Committee –sets up process whereby stakeholders work together on privacy rules • Further action blocked by advocates for explicit privacy rules set out in legislation • Others Senators, stakeholders oppose explicit rules in legislation • House bill up soon –privacy will be key focus • Even if House passes privacy protections, Senate has not resolved privacy issues

HEALTH I. T. Three main debate positions • Some insist Congress must enact strong HEALTH I. T. Three main debate positions • Some insist Congress must enact strong protections • Others say opening HIPAA/codifying new protections disrupts market forces that ensure vendors protect privacy (to retain consumer confidence) • Others want new rules, but –to break gridlock– favor a regulatory approach • “Consumer Partnership for e-Health” believes: Privacy and Quality are equal priorities

HEALTH I. T. Divided We Fail Partners support. . . HR 3800 S 1693 HEALTH I. T. Divided We Fail Partners support. . . HR 3800 S 1693 The “Wired for Health Care Quality Act” • Legislation which sets up a regulatory process to develop specific privacy standards

Breaking the gridl ck Breaking the gridlock HEALTH I. T. Is there a path Breaking the gridl ck Breaking the gridlock HEALTH I. T. Is there a path to consensus?