Better Care for the Individual through Beneficiary and Family Centered Care An Interactive Session with Focus on AIM 1 Domains 1-3 December 11, :00-4:00 PM Presenters: Kathleen Egan, Joan Wickizer, Bev Hoek QualityNet 2012 | Baltimore Marriott Waterfront Hotel December 11-13, 2012

What We would like to Accomplish  Explore and Discuss Implementation of Patient and Family Engagement at the Network, Facility, and CMS Level – BOLD INNOVATION  Explore the Development and Implementation of a Patient LAN – CMS Expectation – A Network Perspective – The Early Experience  Discuss the Development and Implementation of QIAs  Review and Discuss the Grievance Process and the New Patient Contact Utility (PCU) Listen to a Patient’s Experience of Early Dialysis Treatment  Explore together the ICH-CAHPS Initiative – What are the expectations for all parties  Explore, Discuss and Review the challenges and heartbreak Listen to a Patient Voice –“I was an IVD Patient” 2

How we are Hoping to Accomplish These Goals Primarily by facilitated discussion and active participation of all Network and CMS Staff about the work imbedded in AIM 1- Domains 1- 3 and the 9 sub domains : How do we hope to do that:  Sharing thoughts, experiences, research  Listening to each other  Asking questions  Identifying problems  Proposing solutions  Recording of Proceedings  Publishing of Q&A on the NCC Website by January 4,

4 Domain 1 : Patient and Family Engagement Thinking Outside the Proverbial Box – What will Patient and Family Engagement Look-Like in ?

Domain 1: Patient and Family Engagement Sub-Domain 1: Patient and Family Engagement at the Facility Level Sub-Domain 2: Involve Patients/Families in CMS Meetings 5

What are your Best Ideas to Secure Patient and Family Engagement? Please Share with us the bold ideas you have for “meaningful engagement” of Patients and Families at the Network and Facility Level ?  How will you truly pave the way for patients to have an equal voice?  How will you build on past success while exploding into new and unchartered waters relative to Patient and Family Engagement? 6

Domain 1 Patient and Family Engagement Sub- Domain 3: Convene and Support Patient LAN – The SOW Perspective  Measuring the Success of a LAN beyond the numbers  Participation in an already established LAN – that supports ESRD Network Activities  Participation of CMS staff – role and function  The Written LAN Plan  Integration of LAN ideas into Network Functioning  Development of a Quality Improvement Activity (QIA)  Development of at least 2 Outreach Campaigns – What are Campaigns?  Outcomes, Measures, and Timelines 7

Establishment of a LAN The Theory of LAN Development – Jade Purdue – Day 2 Session 5 – Establishment of a LAN – The Early Network Experience (A Sneak-Preview) 8

Establish and Convene and Support a Patient Learning and Action Network (LAN) Network relationship with Medicare Beneficiaries o Ensuring representation of Medicare beneficiaries in shared decision making related to ESRD care in order to promote person-centeredness and family engagement o Learning and Action Networks consciously manage knowledge as a valuable resource. They engage leaders around and action based agenda. 9

Establish and Convene and Support a Patient Learning and Action Network (LAN) Identify patients who have shown an interest in getting involved outside of their dialysis facilities Engage the facility social workers and administrators with the identification of patients who they feel are good candidates to act as Subject Matter Experts (SMEs) on the LAN. 10

Establish and Convene and Support a Patient Learning and Action Network (LAN) Visit facilities in the Network that are identified as part of the 20% of facilities that will be provided with Patient SME agreement forms to recruit patients for the LAN. Ensure the facilities chosen represent the demographics of the Network. Meet with patients and family members at the facility to discuss the LAN and the opportunity they have to become SMEs. 11

12

13 Domain 2: Patient Experience of Care Exploring Network Penetration in the Dialysis Community – Are No Grievances a sign of Success?

The Patient Voice The Early Patient Experience

Domain 2: Patient Experience of Care Sub-Domain 1: Evaluate and Resolve Grievances :  The Patient Voice  Degree of Penetration within the Network Patient Population about the existence and role of the Network.  Case Review Responsibilities  Patient Satisfaction with the Grievance Process  Collaboration with the State Survey Agency - The Network Experience  Expected outcomes, measures, timelines 15

Domain 2: Patient Experience of Care Sub-Domain 2: Consumer Assessment of Healthcare Providers/Systems:  Encourage Facilities – Establish Baseline  Develop QIA based on Data – Option Year 1 and 2 – (getting an early start) 16

Domain 2 Patient Experience of Care Sub-Domain 3: Address Issues Identified Through Analysis of Data:  Track Facility Participation  Assist Facilities – Interpretation of results; Development of action plans  Trend Analysis to evaluate Disparities in Care 17

18 Domain 3: Patient Appropriate Access to In- center Dialysis Care: How will you identify patients at Risk for IVD? What type of Primary Prevention Interventions are you thinking about?

The Story Behind the IVD The Patient Voice

Domain 3 – Patient Appropriate Access to Care Sub-Domain 1: IVDs and IVTs  Establish Baselines  Decrease IVD and IVTs Sub-Domain 2: Address Patients at Risk (NEW Prevention FOCUS)  Identify Patients at Risk for IVD (Patient Voice) Sub- Domain 3: Generate Monthly Reports for the Network Service Area  Identify IVDs, IVTs and failure to place  Identify universe of at risk patients  Identify Averted IVDs before patient became an IVD  Identify Averted IVDs of patients who where already a part of the IVD Process 20

Exploring the Prevention Focus How are you approaching this work? How will you come to a deeper understanding of the disenfranchised patient who becomes the subject of IVD? What will you do differently in 2013, with the patient who is struggling to survive in the dialysis culture/environment? 21

Drawing to a Close Our Commitment and Hopes for 2013 Commitment: Respond to Questions & Post answers on NCC website by January 4, 2013 HOPE Together - Fully engage in the Excitement and Challenges of Our Work for

Questions Thank-You Happy Holidays Contact Information: 23