1. Opportunities & Dangers: Consumers and Electronic Health Records Paul Feldman, Health Privacy Project Deven McGraw, National Partnership for Women & Families

2. Opportunities Real-time access to comprehensive, lifetime medical records Greater patient access and control over their own health information Enhanced ability of providers to share information about patients

3. Opportunities (cont.) Improved health care quality through reductions in medical errors & improved ability to do quality research Enhanced biosurveillance capability Lower health care costs through reductions in errors and duplicative or unnecessary care and achievement of administrative efficiency

4. Imagine… Improved ability to care for ailing family members Improved ability to deliver care in disaster situations Improved ability to manage chronic illness Improved ability to prevent adverse drug interactions

5. Times are Changing National, state & local initiatives to promote health information technology and health information networks But little involvement by consumers to help develop standards and policies to govern these efforts.

6. Need to put patients first A health information system will not work unless patients trust it. Many believe movement to electronic records will result in greater risk to patient privacy. Promise of e-health wont be realized unless we ensure strong privacy and other consumer protections are built in from the start.

7. Momentum is Building! Federal initiatives - Presidents call for EHRs by 2014 Establishment of ONC NHIN initiatives Chartering of American Health Information Community Congress considering legislation –Stark/fraud & abuse exemptions –Preemption of state laws

8. State initiatives In 2005 and 2006 24 states passed 36 bills mandating use of e-health 10 governors have issued executive orders Regional Health Information Organizations (RHIOs) are being built or are in operation

9. Establishing E-Health Networks Presents Enormous Challenges Interoperability Data security Guarding against misuse of information Overcoming significant public distrust Consumer control and access

10. Consumers Must Get Involved Working together, we can ensure that we have systems that deliver: –Greater patient access to (and control over) their own medical information –Greater ability of patients and providers to manage chronic illness –Improved quality of care With protection of sensitive information.

11. National Consumer Principles Individuals should have a means of direct, secure access to e-health information. Individuals should know how their e-health information may be used and who has access to it. Individuals should have control over whether and how their information is shared.

12. National Consumer Principles (cont.) Systems for e-health data exchange must protect the integrity, security, privacy and confidentiality of an individuals information. Governance and administration of e-health networks should be transparent and publicly accountable.

13. PHR example Explain distinction from EHRs Movement to develop is proceeding rapidly on numerous fronts –Health plans –Employers –Software companies Gaps in law