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

HEALTH I.T. 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 Divided We Fail Partners... want to break the gridlock!

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

HEALTH I.T IOM/Harris Interactive Survey: 58% believe health privacy not sufficiently protected by federal/state laws or provider practices 2005 California HealthCare 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 Privacy/Security Is a Concern for Public

HEALTH I.T. 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 Key Building Block to Better Care HIT holds enormous potential to:

HEALTH I.T. 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 Can Enhance Aspects of Privacy

HEALTH I.T. 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 gainconsumer confidence preserve medical ethics Can Resolve Other Privacy Issues ( If Done Well )

HEALTH I.T. 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 Need to Balance Privacy Concerns and Common Good

HEALTH I.T. Wired for Health Care Quality Act unanimously passed HELP Committee –s ets 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 Legislation Status: Delay due to Privacy Issues

HEALTH I.T. 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 Three main debate positions

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

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