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HIT Policy Committee Consumer Empowerment Workgroup. June 17, 2013 4:00 -5:00PM Eastern. Consumer Empowerment Workgroup (WG) Members . WG Members Christine Bechtel, National Partnership for Women & Families (Chair) Korey Capozza, HealthInsight - PowerPoint PPT Presentation

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PowerPoint Presentation

HIT Policy Committee

Consumer Empowerment WorkgroupJune 17, 20134:00 -5:00PM Eastern0Consumer Empowerment Workgroup (WG)Members WG Members Christine Bechtel, National Partnership for Women & Families (Chair)Korey Capozza, HealthInsightJames Cartreine, Brigham and Women's Hospital/Harvard Medical SchoolScott Fannin, Greenway Medical TechnologiesLeslie Kelly Hall, HealthwiseKatherine Kim, San Francisco State UniversitySarah Krug, Society for Participatory Medicine Rita Kukafka, Columbia UniversityPatricia MacTaggart, George Washington University

Beth Morrow, Childrens PartnershipJan Oldenburg, AetnaCasey Quinlan, Mighty Casey Media LLCClarke Ross, Consortium for Citizens with Disabilities Mark Savage, Consumers Union MaryAnne Sterling, Sterling Health IT Consulting, LLC Ann Waldo, Wittie, Letsche & Waldo LLPRyan Witt, drchrono inc

Ex Officio Members Terry Adirim, HRSACynthia Baur, CDCBradford Hesse, NIHKim Nazi, Veterans Health AdministrationDanielle Tarino, SAMHSATeresa Zayas Caban, AHRQ

11CE Workgroup CharterCharge: 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 WGHITPC Privacy & Security Tiger Team WGHITPC Quality Measures WGHITSC Consumer Technology WG 22AgendaRoll CallOverview of two work streamsPolicy framework for Patient Generated Health DataShared Care PlansDiscussion of Policy Framework for Patient Generated Health DataDo we have what we need? What are key policy issues?Public comment33PGHD: Context & Related ONC ActivitiesDefinition of PGHDDraft Stage 3 MU CriteriaPGHD Technical Expert Panel41. PGHD Definition PGHD are health-related dataincluding health history, symptoms, biometric data, treatment history, lifestyle choices, and other informationcreated, 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 2012. 52. Meaningful Use Stage 3 Draft ObjectiveProvide 10% of patients with the ability to electronically submit patient-generated health information that can be reviewed and selectively incorporated by EPs and EHs into CEHRT (e.g. pre-visit information, problem history questionnaires, home medication updates, functional status, patient created health goals, advance directives, etc.) to allow patients to contribute information needed for visits, improve performance on high priority health conditions, and improve patient engagement in care . This could be accomplished through a variety of channels, such as structured or semi-structured questionnaires, (e.g., problem resolution, change in medication dosing) or secure email, with EPs and EHs choosing information to verify in the record that is most relevant for their patients and their health conditions.63. ONCs PGHD Technical Expert PanelNational eHealth Collaborative (NeHC) convening a Technical Expert (TEP) Panel to:provide input on how to successfully implement patient generated health data (PGHD)identify use cases and best practices for integrating PGHD into clinical workflowsGoal: establish a policy framework through guidelines or standards of behavior to: Reduce concernsEnable this information to flow more easilyAppropriately set expectations for providers and patientsOutput: aggregation and summary of good practices7Key Questions Do we need a policy framework for PGHD?

Is the policy framework for amend/correct applicable to PGHD?8Right to view their records on requestRight to request an amendment to a record

BUTHaving rights and exercising rights are not the sameTechnology can make rights easier to exercise or more difficultHIPAA Gives Patients Rights9With the widespread adoption of EHRs and progress with health information exchange (HIE), providers will more readily exchange medical information about their patients with other providers, and patients will undoubtedly have more opportunities to engage with their clinical teams about their medical records. Especially when the VDT requirements go into effect.

When patients access their medical records they may have questions, identify inaccuracies, or want to contribute information that may impact the quality of data in their medical records. Incorporating these patient contributions has the potential improve the quality and safety of patient care.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA), gives you rights over your health information, including the right to get a copy of your information, make sure it is correct, and know who has seen it. Transferring these rights from a paper to electronic world is challenging:May need to consider policies that facilitate electronic feedback and changes and/or amendments to medical records.

9DefinitionThe HIPAA Privacy Rule provides individuals with the right to have their protected health information (PHI) amended in a manner that is fully consistent with the Correction Principle in the National Privacy and Security Framework. See 45 C.F.R. 164.526.

Correction Principle: Individuals should be provided with a timely means to dispute the accuracy or integrity of their individually identifiable health information, and to have erroneous information corrected or to have a dispute documented if their requests are denied.

Definition10Were going to focus on the right to make sure information is correct.

Rationale for this rule:-Individuals have a critical stake in ensuring the accuracy and completeness of their health information and play an important role in ensuring the integrity of that data.

The entitys responsibilities:The health care provider or plan must respond to your request for a correction in a timely manner, usually within 60 days, to correct the record as requested or to notify you the request is denied.When a correction is made, the covered entity must make reasonable efforts to see that the corrected information is provided to its business associates.If the provider disagrees with your request a statement of disagreement must be added to your record.

Reference: http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/privacysummary.pdfhttp://www.healthit.gov/sites/default/files/nationwide-ps-framework-5.pdf

10Your Right to Amend/Correct Your Record*You have a right to request that a health care provider or health plan amend your health informationeither change wrong information or add information to your file that is missing or incomplete

11*Source: 1-pager titled YOUR HEALTH INFORMATION PRIVACY RIGHTS, Produced by the Office for Civil Rights

11Meaningful Use Stage 3 Draft Recommendationon Amending EHRSGRP 204DProvide patients with the ability to request an amendment to their record online (e.g., offer corrections, additions, or updates to the record) through VDT in an obvious manner.

1212DiscussionAre there additional policy issues that emerge in an electronic environment w/ respect to PGHD? For example:Timeliness of provider response/ acknowledgementDoes data from patients need to be flagged as PGHD?Can consumers exercise their rights electronically? Is technology ready to facilitate this?Other?13Wrap UpNext StepsPublic Comment14

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