HIT Policy Committee Consumer Empowerment Workgroup August 21, :00-11:00AM Eastern

Consumer Empowerment Workgroup (WG) Members WG Members Christine Bechtel, National Partnership for Women & Families (Chair) Korey Capozza, HealthInsight James Cartreine, Brigham and Women's Hospital/Harvard Medical School Scott Fannin, Greenway Medical Technologies Leslie Kelly Hall, Healthwise Katherine Kim, San Francisco State University Sarah Krug, Society for Participatory Medicine Rita Kukafka, Columbia University Patricia MacTaggart, George Washington University Beth Morrow, Children’s Partnership Jan Oldenburg, Aetna Casey Quinlan, Mighty Casey Media LLC Clarke Ross, Consortium for Citizens with Disabilities Mark Savage, Consumers Union MaryAnne Sterling, Sterling Health IT Consulting, LLC Ann Waldo, Wittie, Letsche & Waldo LLP Ryan Witt, drchrono inc Ex Officio Members Terry Adirim, HRSA Cynthia Baur, CDC Bradford Hesse, NIH Kim Nazi, Veterans Health Administration Danielle Tarino, SAMHSA Teresa Zayas Caban, AHRQ 1

CE Workgroup Charter Charge: Provide recommendations on policy issues and opportunities for strengthening the ability of consumers, patients, and lay caregivers to manage health and health care. Scope: – Examples of policy issues the WG may engage in include patient generation of their health data, co-managing and sharing care plans, patient reconciliation of medical records from various sources, and new types & sources of patient data. – Important touch points with other workgroups: HITPC Meaningful Use WG HITPC Privacy & Security Tiger Team WG HITPC Quality Measures WG HITSC Consumer Technology WG 2

Agenda Re-cap: Key Takeaways from the 7/18 Patient Generated Health Data Listening Session Group Discussion: Key Takeaways Review DRAFT Recommendations on Patient Generated Health Data Group Discussion: Revise DRAFT recommendations Public comment 3

July 18 Patient Generated Health Data Listening Session Purpose: To provide input into the Meaningful Use Stage 3 recommendation for Patient Generated Health Data (PGHD) and to identify any policy issues we need to address to facilitate more widespread use of PGHD. 4

Key Takeaways Patient Generated Health Data Definition – “PGHD are health-related data—including health history, symptoms, biometric data, treatment history, lifestyle choices, and other information—created, recorded, gathered, or inferred by or from patients or their designees (i.e., care partners or those who assist them) to help address a health concern. – PGHD are distinct from data generated in clinical settings and through encounters with providers in two important ways. First, patients, not providers, are primarily responsible for capturing or recording these data. Second, patients direct the sharing or distributing of these data to health care providers and other stakeholders. In these ways, PGHD complement provider- directed capture and flow of health-related data across the health care system.” Source: Patient-Generated Health Data White Paper. Prepared for ONC by RTI, International, April

Key Takeaways Providers under MU 3 draft recommendations can chose what PGHD is most meaningful and useful to their care delivery/outcomes There are several mechanisms for incorporating PGHD: Primary methods include: – secure messaging, surveys (structured and semi- structured), biometric/device data in cloud, etc. There are four things providers need to be able to do with PGHD: receive, review, respond and record. 6

Key Takeaways, ctd. MU Stage 3 sets up receive and record “When PGHD is implemented appropriately, concerns are addressed and PGHD use becomes routine.” Appropriate implementation means developing workflows and clear policies/procedures for clinicians and patients that help set mutual expectations around PGHD. – Including communicating policies and expectations to patients and families 7

Key Takeaways, ctd. Liability is reduced or eliminated when there is a mutually agreed upon set of information to be shared and clear policies/procedures for handling it. HIPAA: Sets a floor, not a ceiling. Establishes rights around corrections. Providers and patients are aligned around wanting information to be high quality and accurate. – We just need to make it easier. 8

Proposed PGHD Recommendation – 204B* Stage 2Stage 3 Recommendations NewEP/EH MENU Objective: Patients have the ability to electronically submit patient-generated health information. EP/EH MENU Measure: Provide the ability to electronically submit patient-generated health information through structured or semi-structured questionnaires (e.g., screening questionnaires, intake forms, risk assessment, functional status) for more than 10 percent of all unique patients seen by the EP during the EHR reporting period. Standards work needed to incorporate and acknowledge PGHD – feedback from Health IT Standards Committee needed. Certification criteria for devices, continue to work with the Health IT Standards Committee. Consumer Technology WG will have information by the end of the August. 9 * As of August 7, 2013

Group Discussion: Key Takeaways Any additions or corrections to the key takeaways? 10

DRAFT Recommendations 1.Provider organizations should establish policies and procedures for handling PGHD, including, but not limited to, the content to be received; the mechanisms by which it can be submitted/received; and how it will be received, reviewed, acknowledged, and recorded. 2.Provider organizations should clearly communicate the policies and procedures to providers and patients. 3.ONC should work through its channels to educate providers about the need to establish clear policies/procedures that define mutual expectations for providers and patients about PGHD. – Website, RECs, HITRC, etc. 11

Requests for the HIT Standards Committee 1.Ask Consumer Technology WG to examine standards/market re: feasibility of including consumer device data in MU Stage 3 2.Ask Consumer Technology WG to ensure receipt, acknowledge, review, record for PGHD 3.The Consumer Technology WG should identify necessary standards to support PGHD –including but not limited to evaluating standards for incorporating biometric/device data in a summary form for inclusion in Stage 3 12

Group Discussion: Revise DRAFT Recommendations Any additions or corrections to the existing recommendations? 13