Personal Health Records: Increasing Health Care Value Through Enhanced Patient Engagement National Health Policy Conference February 5, 2008 Jodi G. Daniel, JD, MPH Director, Office of Policy and Research Office of the National Coordinator for Health Information Technology (ONC) U.S. Department of Health and Human Services

2February 5, 2008 HHS ONC - Health Policy Conference Agenda Background on Federal Health IT Efforts Roles for Federal Government in Health IT ONC Activities Other Federal Agency Activities

3February 5, 2008 HHS ONC - Health Policy Conference Change is Underway: Drivers of Health IT Adoption Industry Leadership Strong Endorsement from Industry and Commercial Leaders Rising Health Care Costs and Health Information Technology as A Solution Political Leadership on Health Information Technology Adoption Substantial Benefits for Consumers and the Economy Drivers of Health Information Technology Clinical Leadership to Achieve Highest Quality Care

4February 5, 2008 HHS ONC - Health Policy Conference The Future of Health Care - Individuals More emphasis on prevention Elimination of barriers to care at multiple sites Increased use of telehealth & telemonitoring Individualized health education information provided directly to patients Patient management of own care Emphasis on self-care

5February 5, 2008 HHS ONC - Health Policy Conference Federal Government Roles Federal government serves various roles with regard to health and health care: –Convener/Coordinator – ONC (e.g., NHIN, AHIC) –Insurer – CMS –Provider – DoD, VA, IHS –Purchaser – OPM –Promoter of population health - CDC

6February 5, 2008 HHS ONC - Health Policy Conference Executive Order, April 2004: The President created the National Coordinator position –To advance the vision of developing a nationwide interoperable health information technology infrastructure –To achieve the President’s goal of widespread adoption of interoperable electronic health records (EHR) by 2014 Key Role for ONC: Provide leadership for the development and nationwide implementation of an interoperable health information technology infrastructure to improve –The quality and efficiency of health care and – The ability of consumers to manage their health Office of the National Coordinator for Health IT (ONC)

7February 5, 2008 HHS ONC - Health Policy Conference Some ONC Activities Nationwide Health Information Network (NHIN) American Health Information Community (AHIC) Definitions of Key Terms

8February 5, 2008 HHS ONC - Health Policy Conference Nationwide Health Information Network (NHIN) NHIN HIE Consumers ` PHR Clinicians EHR NHIN HIE NHIN HIE NHIN HIE

9February 5, 2008 HHS ONC - Health Policy Conference NHIN Trial Implementations NHIN –A set of standards and specifications that allow health information to flow over the internet in a secure, reliable fashion Trial Implementation Awards –9 state & regional health information exchanges (HIEs) NHIN Cooperative –Test, implement, and demonstrate core services by Sept Plan to include other types of HIEs: –Multi-community Integrated Delivery Systems –Health plans –Health data banks

10February 5, 2008 HHS ONC - Health Policy Conference NHIN Core Services Key Data Services –Data delivery –Patient look-up in an NHIE and between NHIE’s –Supporting access to data for secondary uses Key User and Identity Management Services –User identity proofing, authentication and authorization or attest for connected organizations –Identity adjudication between NHIEs Key Management Services –System and trusted user protection –Emergency access (individual and community)

11February 5, 2008 HHS ONC - Health Policy Conference NHIN Core Services, cont. Key Consumer Services –Identify a personal health record home –Be supported in getting data there –Search for other places where data about them exists –Control who can access their personal health record –View who has accessed their PHR or made NHIE look-ups and how their data may have been disclosed –Send change requests to data providers when they think the data are wrong –Choose to not use network services

12February 5, 2008 HHS ONC - Health Policy Conference QUALITY CONFIDENTIALITY, PRIVACY & SECURITY May 16, 2006 PERSONALIZED MEDICINE (GENOMICS) October 31, 2006 American Health Information Community (AHIC) November 29, 2005 CONSUMER EMPOWERMENT CHRONIC CARE EHRs POPULATION HEALTH A federal advisory committee (FACA) Chaired by Secretary Leavitt Public and private sector members Provides input and recommendations to HHS –How to make health records digital and interoperable –How to assure health information privacy and security is protected

13February 5, 2008 HHS ONC - Health Policy Conference AHIC Workgroup – Consumer Empowerment Broad Charge for the Workgroup: –Make recommendations to the AHIC to gain wide spread adoption of a personal health record that is easy-to-use, portable, longitudinal, affordable, and consumer-centered. Past Activity –Focus on medication history and registration summary Recent Activity –Focus on needs of special populations –Testimony focused on disabled and racial/ethnic communities

14February 5, 2008 HHS ONC - Health Policy Conference AHIC Successor Federal Advisory Committee Public/Private Partnership

15February 5, 2008 HHS ONC - Health Policy Conference AHIC 2.0 Inclusive of all stakeholders Manages prioritization and trade-offs Three Phases 1. Governance by HHS Secretary with AHIC guidance. ONC coordinates all core activities & staffs the governance functions 2. AHIC 2.0 – An early hybrid of a public, private partnership. ONC continues to coordinate all core services 3. AHIC 2.0 – Self-sustaining Public Private Partnership. ONC continues to coordinate activities related to population issues

16February 5, 2008 HHS ONC - Health Policy Conference AHIC 2.0 Timeline AHIC approves approach to the AHIC successor Secretary’s public invitation for participation July 31 Aug May - Jun Launch group for AHIC successor selected and announced AHIC successor formally incorporated and funded 2008 Nov - Dec Transition interoperability functions from AHIC to AHIC successor Jun - Nov Last meeting of the AHIC Jan 22 LMI-Brookings Team to fully establish AHIC 2.0 by December 2008

17February 5, 2008 HHS ONC - Health Policy Conference Health IT Definitions Project Create consensus-based definitions and context of use for five key Health IT terms –Personal Health Record (PHR) –Electronic Health Record (EHR) –Electronic Medical Record (EMR) –Regional Health Information Organization (RHIO) –Health Information Exchange (HIE) Late February/Early March 2008 public comment period ( End March 2008 – Final report to ONC

18February 5, 2008 HHS ONC - Health Policy Conference Federal PHR Activities Centers for Medicare and Medicaid (CMS) ­ Request for Information (2005) ­ Feasibility test of using claims data to populate PHRs (2006) ­ Pilot projects to encourage Medicare beneficiary use of PHRs (2007) Indian Health Service (IHS) ­ Initial plans to develop an online PHR portal that will enable patients to securely log in and view elements from their record. Centers for Disease Control (CDC) ­ Interest in PHRs for health promotion, equity, and monitoring ­ Enhancing use of preventative services, adherence to guidelines ­ Actionable health messages within PHRs

19February 5, 2008 HHS ONC - Health Policy Conference Federal PHR Activities (cont.) Department of Defense (DoD) ­ MHS Beneficiaries with Common Access Cards (CAC) can access a PHR application via TRICARE Online to securely access EHR data ­ Includes: Personal Information, Health History, Medication Profile, Allergy Profile, Personal Health Summary Veteran’s Administration (VA) ­ My HealtheVet: A web-based product that gives veterans information and tools to improve their health. They are able to: ­ Add information to a personal health journal about over-the-counter medications, allergies, military health history, medical events, tests & allergies. ­ Record and track personal information such as contact information, emergency contacts, health care providers, and health insurance information. ­ Record and track personal health measurements (blood pressure, blood sugar, cholesterol, heart rate, body temperature, weight, and pain). ­ Office of Personnel Management ­ Encourage contracting health plans in the Federal Employees Health Benefits (FEHB) Program to adopt health IT, quality and cost transparency, and PHRs.

20February 5, 2008 HHS ONC - Health Policy Conference For More Information: