Janie Appleseed 1 October 15 th, 2015

Agenda Introduction Goal of Pilot Tier Piloting Activity to Pilot Role of Janie Appleseed in the pilot Standards and Technologies Under Consideration Logistics Ecosystem Defining Success Resources/References

Janie Appleseed is a non-profit organization providing education and services which promote consumer health literacy for the information age. JanieAppleseed.net.JanieAppleseed.net. Give personal health record (PHR) technology a good start. Foster patient empowerment and engagement with the aim of shifting focus from the treatment of illness to the promotion of wellness. Involve consumers in the adoption and meaningful use of health information technology. Lisa Nelson is an independent consultant, focused on the development and implementation of standards for health information exchange. HL7 Certified CDA Specialist and she holds a BA in Computer Science, an MBA with concentration in information systems, and an MS in Medical Informatics. Specializes in applications of the Clinical Document Architecture (HL7 CDA R2). Experienced with the development of electronic Clinical Quality Measures (eCQMs). Author of the C-CDA header template for the Patient Generated Document. Co-editor on the new C-CDA R2.1. Major contributor in the development of standards associated with Care Plan documents of all types. Introduction: Pilot Team NameRole Lisa NelsonBeneficiary/Beneficiary advocate

Introduction: Organization Who are you? Janie Appleseed is Lisa Nelson – hence, consumer facing initiatives designed to offer the human interaction required to engage individuals in the use of new technology in ways that align with the latest standards being developed to foster interoperability. What do you currently do? Janie Appleseed offers consumer education that teaches consumers health literacy and computer skills needed to improve their lives through the use of personal health record (PHR) health information technology (HIT). How are you involved in services and support? We engage in two-way dialog with consumers about the use of electronic health records, teaching and listening at the same time. We develop “user stories” that illustrate consumer views on meaningful uses of PHRs and HIT. We develop and represent consumer requirements in the creation of consensus- based HIT standards. How do you currently carry out eLTSS activities We deliver consumer-oriented presentations and workshops designed to provide information, develop new computer skills, and solicit feedback that can be transformed into consumer requirements for HIT technology. We help people think about, understand, and cross the “know-do gap” of new technology use.

… [Life] Introduction: Organization

6 … [Life] Longitudinal Health Record Introduction: Organization

… [Life] Value Story: Adult for Youth Introduction: Organization 7

Pilot Introduction: Business Drivers The Janie Appleseed mission is to create a network of individuals who are “activated consumers”. Success is measured by: An increase in the number of connected individuals—acting as consumers representing the needs of their family and their personal needs. An increase in the extent to which consumers integrate the use of HIT systems in their day- to-day lives. An increase in the extent to which consumer needs are considered in the design of PHR systems. An increase in the number of opportunities where consumer input can have a greater impact on the development of new PHR systems. An increase in the number of other individuals within the HIT industry who are connected to foster this mission. 8

Which Tier are you piloting? While addressing Tier 1 requirements, we expect to explore, clarify and document information flows that reach the individual and their families in order to understand how patient’s goals, preferences, and priorities contribute to the eLTSS care planning process and demonstrate the potential value added in a person’s life through the use of new technology. While addressing Tier 2 requirements, we would focus on developing and delivering education needed to support consumer use of new technology offering more efficient access to eLTSS care plan information. We would support beneficiaries to use piloted technology and help them exchange digital information with provider facing systems. We would gather findings from the consumers’ experience and formulate feedback that could be used to improve the piloted technology implementations. While addressing Tier 3 requirements, we would focus on understanding and documenting the outcomes in people’s lives when they are engaged in using new technology that offers real-time eLTSS care plan updates between beneficiaries, caregivers, providers and payers. While pilot vendors and organizations focus on delivering the eLTSS care plan systems, Janie Appleseed will focus on measuring and monitoring changes in consumer behaviors and health outcomes that are attained through the use of the new technology. We also hope to contribute to the design of measures developed to show how the data being shared can be used to support data analytics for clinical decision making and clinical quality management, to ensure that the evaluation of health outcomes and the effects on beneficiary and caregiver satisfaction are addressed in meaningful ways. October 2015 – April 2016

Standards Under Consideration: Tier 1 – Paper Forms, Paper Advance Directives – Scanned copies or pdf files that can be shared by mail, fax, , drop-box, etc. Tier 2 – Unstructured CDA documents (Level 1) – CDA Documents with structured body sections (Level 2) – BB+ Push, Direct, HIE or Portal-enabled sharing Tier 3: – CDA Documents with structured body sections and machine readable entries – More advanced security (DS4P, OAuth2, BB+ Pull) – Structured data processing (CDS) (FHIR)

Goal of the Pilot Opportunities to envision and specify how consumers will participate in the flow of information and to envision all that is required to integrate new HIT technology into the way we live.

User Story 2 12 Beneficiary/Advocate VDT Opportunities to envision and specify how consumers will participate in the flow of information and to envision all that is required to integrate new HIT technology into the way we live.

Pilot Workflow Achieve coordination of care that includes patient involvement People contribute and receiving information digitally to: request, inform, choose, accept or request alternatives, confirm, update, view, download and transmit their care plan. – Head in the direction set by MU Stage 3 Identify, Record, and Access Information Documents Reference and Link Documents Record and Access Information Directly Shared by a Patient 13

What are you intending to pilot Which one(s) apply? – Create Plan – Approve/Authorize Plan/Services – Access, View, Review Plan – Update Plan Have you identified a Service provider with which to work? – MyDirectives.com (for Advance Directives) – Others welcome Do you know if they have an electronic system? – MyDirectives.com produces a digital advance care plan document – All consumer-facing applications welcome Do you know which sub-domains from the Functional Requirements document will you pilot? – Content experience in many areas: Work, Community, Choice & Decision Making, Relationships, Self-Direction, Demographics, Person-Centered Profile, Medication, ADLs/IADLs, Safety, Behavioral Needs, Restrictions, Service, Financial/Payer Information, Service Information, Family Information, Community Connections, Access & Support Delivery, Information & Planning, Health

What role do you play in the pilot What role do you play in your pilot? Janie Appleseed could be engaged to help a pilot: – Support pilot initiation and population of the Requirements Technical Matrix to include and address consumer requirements – Support pilot design to make it possible to engage real consumers in the role of Beneficiary/Advocate – Support development of “Value Stories” describing the use of the eLTSS solution from the consumer’s point of view

Pilot Ecosystem MyDirectives.com – a system allowing consumers to create advance care plans PHR systems Portal systems for Beneficiaries and Beneficiary Advocates Consumer’s PC/laptop Consumer’s Fax Machine US Postal Service Consumer’s Scanner Consumer’s , (Consumer-controlled Direct Address) Consumer’s i-phone or android

Pilot Logistics: Timeline: – Complete round-one pilot by April 2016: Participate in Kick off: October 2015 Engage with Partners/Providers doing a pilot- October-December 2015 Support pilot planning and analysis; completion of Requirements Technical Matrix: March 2016 Develop consumer-oriented “Value Stories” based on Pilot: April 2016 Challenges: – Time constraints: Specific, focused consultation tasks at key points in the pilot – Provide supporting input in December – April Development of consumer Value Stories in March-April Call Now! I’ll be standing by

How do you define success Demonstrate that including the consumer in a technology pilot improves the quality of the pilot and produces outcomes that more clearly demonstrate how patient-centered care improves patient-experience, increases population health management, and decreases per capita cost of care Patient Centered Care Population HealthPer Capita Cost Experience of Care Achieve improvement in all aspects of the triple aim.

Helpful References A consumer-driven culture of health: the path to sustainability and growth A service that enables consumers to make and share their advance care plans: Listing of PHR solutions: Janie Appleseed’s contact information: – – phone: